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/
Showing posts with label Medical. Show all posts
Showing posts with label Medical. Show all posts
7.01.2012
3.13.2011
A day after ER update & reflection
So yesterday's fiasco of ER visit & my own emotional meltdown did not go without higher learning. I got her home in one piece without a tear, helped her to bed & tried to comfort her without success, she was enveloped in a drugged state that was taking her sensory dysfunction to a whole different level. By God's grace, she literally fell asleep in the time it took me to go up a flight of stairs, get her the pain reliever I was worried about dripping into her. Afterward, I found myself counting her respirations, listening to her restricted airway & praying for strength until the tears came. I left her room & exhaled a tide of tears & realized I had been trying to do it all on my own. E. was home wrecked with the stomach flu & Auntie Paris was kind enough to see all the others to bed that evening, so I assumed I was in charge (yet I wasn't alone). I was so distraught over Bella's stress & my perspective of her suffering, it found me under a blanket of emotion desiring only to alleviate her pain.
The irony is that by trying to do own my own & logic through the crisis, as the skilled nurse, I lost sight that I'm never alone, nor is she. I've become to accustomed to being the protector, advocate & Momma Bear (for Bella, her 3 siblings, their father & many that enter my life) that I often don't remember to "let go & Let God" in the crisis. My logic & performance under pressure is a gift, yet sometimes at a higher cost to my endurance. I'm learning & humbled.
Bella awoke very late today, after my multiple checks, yet when she did climb the stairs to the family room her sleepy face imparted a soft smile & her brilliant blue eyes blinked through the wisps of sleepy hair covering her sweet face. She had climbed the entire 14 stairs upright, albeit her right leg still dislocated. I knelt down to tell her good morning & she reached for me & snuggled into the best Bella hug a Momma could get. As I hugged her & rubbed her back, there were two loud popping sounds & when I looked-- to my surprise her hip had reset itself as we embraced. Her leg remained intact the entire day. Praise God, I hear You Lord.
The irony is that by trying to do own my own & logic through the crisis, as the skilled nurse, I lost sight that I'm never alone, nor is she. I've become to accustomed to being the protector, advocate & Momma Bear (for Bella, her 3 siblings, their father & many that enter my life) that I often don't remember to "let go & Let God" in the crisis. My logic & performance under pressure is a gift, yet sometimes at a higher cost to my endurance. I'm learning & humbled.
Bella awoke very late today, after my multiple checks, yet when she did climb the stairs to the family room her sleepy face imparted a soft smile & her brilliant blue eyes blinked through the wisps of sleepy hair covering her sweet face. She had climbed the entire 14 stairs upright, albeit her right leg still dislocated. I knelt down to tell her good morning & she reached for me & snuggled into the best Bella hug a Momma could get. As I hugged her & rubbed her back, there were two loud popping sounds & when I looked-- to my surprise her hip had reset itself as we embraced. Her leg remained intact the entire day. Praise God, I hear You Lord.
It Ain't All Beautiful, Yet SHE IS
After all day with her hip dislocated & many failed attempts to reset it, Bella & I went to ER. I held off so long, b/c I was more afraid of the pain shewould endure in the ER (physical, mental, sensory overload), then the discomfort she's dealt with all day. Something about laying over your distressed child pulling at IV tubing, bp cuff, O2 mask, pulse Ox, etc trying to protect her that puts the gift of life & health in perspective quickly.
I'm done for today-- so stick a fork in me. The tears are flowing, b/c I'm so tired, frustrated & exhausted (for her & me). They hard cast her ankle to thigh thinking that if they immobilize the knee, her femur wouldn't be able to roll our of socket. She endured an IV, 7 blasts of x-ray radiation, multiple dosing of hallucination inducing sedative, a million hands grabbing at her & holding her down over the course of 5 hours. The end result, she's "ALL DONE" in case you haven't heard her scream it at you over the final hour & then-- her hip dislocated after 10 minutes in the hard-cast.
So ortho doc says in a NEWSFLASH tone- "she's gonna need surgery". "She's fine for now, so long as blood flow doesn't deteriorate, but she'll have arthritic hips, a need for total replacement & we don't have a lot of options for a child her age right now-- including surgery." I'm thinking to myself as I peel her hysterical 50 lb. body of thrashing muscle & one weak hip off the ER floor-- "I hope that wasn't the good news."
How the Hell can medicine offer her complete heart reconstruction of her 10 week old heart (7 years ago), which was the size of a peach pit, but not have any options for her hip/leg/mobility?!
It's midnight... she just went to sleep after absolute thrashing fit the last time-- I HATE anesthesia!! So, I'm praying she didn't pick up anything worse at ER than she went in with & that the mega supplement cocktail she took in b/t screams, will alleviate the ER drug load on her kidneys, liver, etc. We'll deal with radiation in the morning. I don't for the life of me understand why she must endure all this... why her little body must suffer so much. Have I said I'm done today? It's official.... stick a fork in me.
I'm done for today-- so stick a fork in me. The tears are flowing, b/c I'm so tired, frustrated & exhausted (for her & me). They hard cast her ankle to thigh thinking that if they immobilize the knee, her femur wouldn't be able to roll our of socket. She endured an IV, 7 blasts of x-ray radiation, multiple dosing of hallucination inducing sedative, a million hands grabbing at her & holding her down over the course of 5 hours. The end result, she's "ALL DONE" in case you haven't heard her scream it at you over the final hour & then-- her hip dislocated after 10 minutes in the hard-cast.
So ortho doc says in a NEWSFLASH tone- "she's gonna need surgery". "She's fine for now, so long as blood flow doesn't deteriorate, but she'll have arthritic hips, a need for total replacement & we don't have a lot of options for a child her age right now-- including surgery." I'm thinking to myself as I peel her hysterical 50 lb. body of thrashing muscle & one weak hip off the ER floor-- "I hope that wasn't the good news."
How the Hell can medicine offer her complete heart reconstruction of her 10 week old heart (7 years ago), which was the size of a peach pit, but not have any options for her hip/leg/mobility?!
It's midnight... she just went to sleep after absolute thrashing fit the last time-- I HATE anesthesia!! So, I'm praying she didn't pick up anything worse at ER than she went in with & that the mega supplement cocktail she took in b/t screams, will alleviate the ER drug load on her kidneys, liver, etc. We'll deal with radiation in the morning. I don't for the life of me understand why she must endure all this... why her little body must suffer so much. Have I said I'm done today? It's official.... stick a fork in me.
11.12.2010
Great Expectations
Here we are in November already. Time is a constant whir. Sometimes when there is a pause I have to remember to celebrate the mountains we've conquered. We always are celebrating the steps along the way of the constant achievements of all the children, because though many are quite simple-- all are magnificent no matter how minute they may be. Similar to single brush-strokes in an artists painting, these victories are unique & majestic when you step back to let it all soak in.
The past month and a half has been more tumultuous than the norm. With gains realized through the children's chelation, comes even greater challenges of their fragile over-tasked immune systems. With healing, comes sickness; irony at it's best. Bella's been so susceptible to viruses & we are in full support mode health-wise for a few months now. Her Hashimoto's has progressed into her eye system, just as her father's. There have been some scary moments, yet amazingly- she is communicating more intentionally & independently after recovering from the last big spell which took us to the ER. She spoke of her teacher, her aide & school Speech Pathologist (by name) at home, the first time ever this past week. I love seeing her spirit shine through the fingers of Autism. It makes me want to fight harder to peel away the grip. More than anything, so she knows, I know *she's inside* there all along & we'll never give up on helping her find her way. Don't get me wrong, the Autism is a part of her now & I accept that; what I cannot accept is doing nothing when we are finding interventions lessening it's affect. I guess I'm not much for standby mode. Bella (L) & Beautiful friend (R)
Roo was knocked down again by another lung virus & a strep flare is suspect. I found myself counting her respirations while snuggled into my lap. She has a fiercely intense personality, yet her petite little frame is so fragile at this point. It's only been a month since our last ER visit & she crashed again this weekend. Her Irish complexion is mottled with the extra load on her lungs. Her beautiful baby blues are framed in the all too familiar dark circles giving indication of inflammation and decreased O2 sats. She began a fever on Sunday, but burnt it out within a day. Eucalyptus oil in a humidifier, astragulus, oscillium, probiotics, vit C/D/B12 & epsom salt baths. Her cough was croupy Fri night & Saturday. Today it's still the asthma bark. Thankfully, we saw Dr. G. today & will detox this weekend.
S-bear continues to break through, although his emotional balance and compulsive behavior is out of whack right now. It's almost like the sprint of developments which are occurring are overloading his heart-- he gets mad & sad easily. He vocalizes it poignantly-- but I'm glad, because it was only a handful of months ago that he was not able. He told me, "Mommy, I scared." the first time ever yesterday. I asked him "why?" & he said, "the sounds are too loud" (meaning the television). It's sad that the common noises are overpowering to him, but AWESOME that he is able to tell me what he is feeling & then be comforted.
SJ is keeping up with the other girls in keeping me on my toes. Last week's hospitalization following a series of seizures put me in check to not take anything for granted. When I'm put into those moments knowing how fragile this life is with one of these precious babies, I realize even more how far we've all come. We're nearing Bella & the twins' birthdays which bring back a flurry of concerning days in NICU. Hard to believe our Bella had a completely reconstructed heart now almost 7 years ago.
I'd like to say that I don't take anything for granted, yet I know I settle in to the all moving forward pattern all to easily & it's nearly scary to look back for each child & know that *back there* is always a possibility again. Regression-- the abominable & the hard to swallow factor that describes my kids' Autism. We've seen several chapters of regression amongst the four of them, some more profound than others. Thankfully we're balanced with progression now too, yet it's not a seamless transition, but more a dance full of unexpected (good & bad alike).
Strep, yeast, mercury/metals & systemic infections all making their bodies work so very hard. Today brought us physical evidence of damage done by their MMR vax. It has taken them 11 months of chelation to get down through the layers of the toxic spill that sent our twins into their first regression and onset of Autism. Their last vaccinations totalled 7 each simultaneously; Sbear evaporated within 2 weeks & Roo's was a steady decline. They are the warriors, not me. I fumble forward & follow their lead, praying for Him to show us how.
Being on this tumultous journey certainly gives the mind eternal food to analyze, assess & reflect; my mind has become skilled at triage of the profound needs tucked underneath our roof. It's when I pause or take the time to "let God" that I see my expectations. I see that all my doings are done for good, but most often not without expectations. Just over a year ago I met a kindred soul who taught me that when I put my expectations on others & myself-- all will fall short. When I put my expectations to God, I am no longer dismayed by any deficit. This is a really challenging mindset to keep, yet when I'm tuned into the bigger deal-- the great expectations I had previously become exponentially larger gifts in multifaceted dimensions beyond comprehension.
In closing will leave you with this post of an astounding woman realizing the challenge I speak to above. I love you, Meredith-- you are beyond amazing! http://cornishadoptionjourney.blogspot.com/2010/11/i-have-so-many-thoughts-id-like-to.html
5.21.2010
E-Holai Sheesh Batman!
I'm astounded at the astronomical amounts of our medical/bills related to Autism alone. Upon tasking myself with putting together in a spreadsheet all these regular recurring costs for *medical treatment* the results are ALARMING! For just vitamins, supplements & supportive monthly medical visits we are at 10% of my husband's gross income. This number does not include: acute illness costs (meds & copays), therapy, advocates/lawyers (to obtain appropriate school services), the insane amounts of money for items free of: food coloring, preservatives, pesticides, corn, wheat/gluten, dairy/casein/lactate, artificial sugars, artificial flavorings, perfumes, dyes... I mean really-- I wanted to punch out the clerk when she said, "What a bargain!" in reference to the 4 - EVERRYTHING free blueberry muffins I bought in a time crunch that were $9. Thank goodness our government acknowledges the financial hardship of raising children whom are medically fragile & disabled, by tax deductible considerations-- or wait that was my imagination.
You know how pissy I get that I must buy specially compounded acetaminophen that is free of dyes, fructose, etc? For entertainment, come shopping with me-- it's a hoot!
Just yesterday, I put sunscreen on all the kids & my micro-sensitive blondey (Roo) looked like she was in a street fight, within an hour. Poor baby had puffed red raccoon eyes, & streaks of raised red rash. Our *safe-brand* sunscreen must have had an ingredient change. I had to resort to dye-free benedryl as the lesser of two evils. She said to me, "Mommy- my face does hurt. Yup, I want to scratch it." OMG. Seriously!?
I'm done now... the hormone surge is over. As Clarke Griswold once said, ".... Holy $hit-- where's the Tylenol (dye free & non-recalled of course)".
You know how pissy I get that I must buy specially compounded acetaminophen that is free of dyes, fructose, etc? For entertainment, come shopping with me-- it's a hoot!
Just yesterday, I put sunscreen on all the kids & my micro-sensitive blondey (Roo) looked like she was in a street fight, within an hour. Poor baby had puffed red raccoon eyes, & streaks of raised red rash. Our *safe-brand* sunscreen must have had an ingredient change. I had to resort to dye-free benedryl as the lesser of two evils. She said to me, "Mommy- my face does hurt. Yup, I want to scratch it." OMG. Seriously!?
I'm done now... the hormone surge is over. As Clarke Griswold once said, ".... Holy $hit-- where's the Tylenol (dye free & non-recalled of course)".
5.19.2010
Recovering... the boy within
Even though I am sick now with the flu the kids had last week, I cannot help but be a bit giddy. Amongst all this sickness is healing & miracles.
Autism, an UGLY & uninvited houseguest, whom first arrived 3 years ago now as it took away my then baby boy after his vaccinations. It was abrupt & an unkind descend into a private Hell no parent wants to visit. Within 2 weeks, S-bear lost all eye contact, stopped talking, stopped responding to language & withdrew into his own inner world.
His eldest sister was showing *signs*, but not catastrophic like S-bear's regression. Bella's biggest regression had yet to take her down & would ensue only half a year later. S-bear on the other hand was a shell of the toddler he had been in such a quick timeframe. I remember those days with a sick feeling in my stomach, because of the amount of pain it caused. I have never seen my husband so devastated & left wrecked & hopeless with grief; he told me he didn't know if S-bear would ever know how much he loved him & it was killing him.
Though S-bear is extremely smart & minimally verbal (since about 3 years of age)-- he has always been somewhat in another realm since that first regression. His audio processing has always been really lacking & he is a visual reader of situations in response, rather than by hearing to & processing language. He's made gentle progress, as we've have sifted through the quicksand of symptoms Autism gives us, but I have to say WOW-- now we're getting somewhere. Since treating a chronic yeast infection of his gut, his speech has skyrocketed. I challenge the docs who think there is no gut-brain connection with this example or even friggin alcohol for crying out loud!
I have to write this stuff down, so I can clearly remember as each child is always evolving & my brain is saturated. My prayer is that I'll write this, to one day rediscover what S-bear used to be like, having forgotten how lost he once was.
Autism is layers & we are slowly peeling back pieces here & there, careful not to go too fast, because that can cause damage too. S-bear has been shedding some significant layers in the past two months. He is speaking so well, in near full sentences & addressing me by name with social intent, seeking out his partner in crime (his twin), & swiftly telling us how is feeling ("I'm mad". is the latest.) He told me this morning, "Mom, how about a field trip? swimming?" I said, "Not today honey; you've got school today. Maybe next week you can go on a field trip." He was quiet for a couple seconds, then retorted "School to see Jessica (Ms. Jessica is his teacher)." I about flipped.
Again, some will read this & say big wow-- what's the big deal? It's perspective from where this child has come from. Imagine your child is deaf & cannot lipread, now you try to give verbal directions to him/her as they remain unaffected & non-responsive-- that's where S-bear has come from. That's why I'm so excited & amazed. Not only that, but the things he is expressing now verbally is correct-- he's referring to himself as I/my rather than his name in third person. It's all in there inside his head-- he's been soaking it up & we are finally seeing who he is inside.
This is called recovery. I'm grateful & will keep working to achieve degrees of recovery for each child. People that believe it's not possible are disillusioned. Autism is much like brain injury-- recovery is possible & individual for each patient, there's just no gaurantees & it takes a lot of work. Whenever I feel so saturated & spent, I envision the rays of sunshine inside each of my children trying to shine to the outside. I will never give up at trying to reach that light and their potential, & knowing who they are, b/c no matter how exhausted I am, they are moreso... no matter how stressed I am, so are they... recovering my babies is what I am to do now.
Even if they regress again, I will savor these victories if only in moments, hours or days & will try again. If it were your child what would you do?
Autism, an UGLY & uninvited houseguest, whom first arrived 3 years ago now as it took away my then baby boy after his vaccinations. It was abrupt & an unkind descend into a private Hell no parent wants to visit. Within 2 weeks, S-bear lost all eye contact, stopped talking, stopped responding to language & withdrew into his own inner world.
His eldest sister was showing *signs*, but not catastrophic like S-bear's regression. Bella's biggest regression had yet to take her down & would ensue only half a year later. S-bear on the other hand was a shell of the toddler he had been in such a quick timeframe. I remember those days with a sick feeling in my stomach, because of the amount of pain it caused. I have never seen my husband so devastated & left wrecked & hopeless with grief; he told me he didn't know if S-bear would ever know how much he loved him & it was killing him.
Though S-bear is extremely smart & minimally verbal (since about 3 years of age)-- he has always been somewhat in another realm since that first regression. His audio processing has always been really lacking & he is a visual reader of situations in response, rather than by hearing to & processing language. He's made gentle progress, as we've have sifted through the quicksand of symptoms Autism gives us, but I have to say WOW-- now we're getting somewhere. Since treating a chronic yeast infection of his gut, his speech has skyrocketed. I challenge the docs who think there is no gut-brain connection with this example or even friggin alcohol for crying out loud!
I have to write this stuff down, so I can clearly remember as each child is always evolving & my brain is saturated. My prayer is that I'll write this, to one day rediscover what S-bear used to be like, having forgotten how lost he once was.
Autism is layers & we are slowly peeling back pieces here & there, careful not to go too fast, because that can cause damage too. S-bear has been shedding some significant layers in the past two months. He is speaking so well, in near full sentences & addressing me by name with social intent, seeking out his partner in crime (his twin), & swiftly telling us how is feeling ("I'm mad". is the latest.) He told me this morning, "Mom, how about a field trip? swimming?" I said, "Not today honey; you've got school today. Maybe next week you can go on a field trip." He was quiet for a couple seconds, then retorted "School to see Jessica (Ms. Jessica is his teacher)." I about flipped.
Again, some will read this & say big wow-- what's the big deal? It's perspective from where this child has come from. Imagine your child is deaf & cannot lipread, now you try to give verbal directions to him/her as they remain unaffected & non-responsive-- that's where S-bear has come from. That's why I'm so excited & amazed. Not only that, but the things he is expressing now verbally is correct-- he's referring to himself as I/my rather than his name in third person. It's all in there inside his head-- he's been soaking it up & we are finally seeing who he is inside.
This is called recovery. I'm grateful & will keep working to achieve degrees of recovery for each child. People that believe it's not possible are disillusioned. Autism is much like brain injury-- recovery is possible & individual for each patient, there's just no gaurantees & it takes a lot of work. Whenever I feel so saturated & spent, I envision the rays of sunshine inside each of my children trying to shine to the outside. I will never give up at trying to reach that light and their potential, & knowing who they are, b/c no matter how exhausted I am, they are moreso... no matter how stressed I am, so are they... recovering my babies is what I am to do now.
Even if they regress again, I will savor these victories if only in moments, hours or days & will try again. If it were your child what would you do?
5.14.2010
5.13.2010
Rain Rain Go Away.... the activities of a SICK day
As part of a experiment I'm going to write down the activities of the course of our day with 3 kids home sick. This ought to be insightful & scary.
6AM
- Turn off alarm & wish there were time for a snooze. I'm behind schedule already!
- Get my java fix for energy... thanks to the sweet husband who makes it each day.
- Get S-bear up, Roo sleeping in due to flu - S-bear gets herbal cough support today for bad cough
- After changing him, mixing up protein milk he's settled snuggled on sofa
- Bella's turn to get up. Thankfully, no fever (everyone else has had over past 3 days).
- Called Mom while getting kids ready.
- Changed & mix up thyroid meds. Listening to her music while I pack lunch & make her breakfast.
- S-bear doesn't want to eat (big surprise, poor punkin). Bella does -- that is a surprise, maybe we'll beat the bus today.
- Roo yelling from her room. Go check on her... fever free, still sick. Change her & settle on sofa.
- Check baby... still sleeping with temp. Call Speech Therapist to switch SJ's session to S-bear.
8AM(ish)
- Get Bella cleaned up, teeth brushed, glasses on, shoes & coat, backpack & lunchbox. Bus is here-- VICTORY!
- Twins hungry, but not wanting good breakfast. So, sneak protein, hemp oil, honey & super greens powder into peanut butter sandwiched b/t 2 graham crackers. S-bear won't eat, but Roo will eat his, too.
- Mixing up kids supplement cocktail (missed Bella's- shoot!): lemon fish oil, probiotic, vit C, vit D, Cal/Mag/Zinc, B vits, digest enzymes -- get bribery items ready (2 organic jelly beans) - No, I'm not cruel... they have to take this stuff for digestive dysfunction & nutrient deficiencies.
- Twins are mega crabby... gonna be a fun one.
- Email Bella's teacher. Call twins schools.
- Check baby's temp. She said, "good morning, baby" so cute (what I say to her-- *delayed echolalia* repeating language at later time, for you non-Autism folks).
- Change & mix no-dye flavoring into baby's antibiotic-- so she doesn't spray it back in my face (1st ever ear infection)
- Homemade protein drink for baby, since no one is eating this morning
- Grab clothes from dryer, load up both machines. Doorbell-- Speech therapist is here.
- S-bear is willing to participate, so get Roo occupied with constructive project & baby gets vitacocktail.
- In & out of therapy with S-bear while therapist does reassessment. Printing data sheets for therapy.
- Reoccupying Roo & comforting baby who seems to need extra love today. =>
- Finish folding basket of laundry on floor with SJ on lap & discussing goals with speech therapist, before she leaves.
10AM(ish) I think?
- Defuse 3 sequences of fighting b/t twins with timeouts & lots of crying (where's the earplugs?)
- They want to eat, make Roo & baby fruit smoothie. Roo still doesn't want to eat... S-bear refuses the crackers he asked for.
- Baby wants to go outside & cries when she can't (this kid has some pipes!)
- More laundry folding & organizing baskets to go upstairs.
- Books for Sbear, playhouse for baby & Roo is playing with word game. They are quiet-- time to run.
- Strip twins sheet for wash. Sort adults laundry.
- S-bear & Roo fighting again, not really-- he is just extra sensitive & she's domineering as usual. Aaaaccckkk!
- Change & cuddles for baby. LOL- she found & donned a stocking cap with braids down each side & fluffy pom-poms on top, plus clean socks from my laundry basket on her hands.
- Setup Spongebob kids basketball hoop, get out an old-new parrot Fur-real toy, and the Farm Bingo (can ya tell we're looking for novel entertainment).
- I want "Chhhhhhhhhhhhhiiiiiicken!"- Ok, S-bear declares lunch early. Roo won't eat this time.
- Cleanup.
- 2 phone calls while disarming arguments (insurance co. & therapy center)
- answer 4 waiting texts.
It's 11:00AM(ish)-- and I'm done with the experiment. No time! I'm hungry, gotta pee, & need to brush my teeth (I know, so gross). Bet you're disappointed.
The sun is out though-- may I have an AMEN!
6AM
- Turn off alarm & wish there were time for a snooze. I'm behind schedule already!
- Get my java fix for energy... thanks to the sweet husband who makes it each day.
- Get S-bear up, Roo sleeping in due to flu - S-bear gets herbal cough support today for bad cough
- After changing him, mixing up protein milk he's settled snuggled on sofa
- Bella's turn to get up. Thankfully, no fever (everyone else has had over past 3 days).
- Called Mom while getting kids ready.
- Changed & mix up thyroid meds. Listening to her music while I pack lunch & make her breakfast.
- S-bear doesn't want to eat (big surprise, poor punkin). Bella does -- that is a surprise, maybe we'll beat the bus today.
- Roo yelling from her room. Go check on her... fever free, still sick. Change her & settle on sofa.
- Check baby... still sleeping with temp. Call Speech Therapist to switch SJ's session to S-bear.
8AM(ish)
- Get Bella cleaned up, teeth brushed, glasses on, shoes & coat, backpack & lunchbox. Bus is here-- VICTORY!
- Twins hungry, but not wanting good breakfast. So, sneak protein, hemp oil, honey & super greens powder into peanut butter sandwiched b/t 2 graham crackers. S-bear won't eat, but Roo will eat his, too.
- Mixing up kids supplement cocktail (missed Bella's- shoot!): lemon fish oil, probiotic, vit C, vit D, Cal/Mag/Zinc, B vits, digest enzymes -- get bribery items ready (2 organic jelly beans) - No, I'm not cruel... they have to take this stuff for digestive dysfunction & nutrient deficiencies.
- Twins are mega crabby... gonna be a fun one.
- Email Bella's teacher. Call twins schools.
- Check baby's temp. She said, "good morning, baby" so cute (what I say to her-- *delayed echolalia* repeating language at later time, for you non-Autism folks).
- Change & mix no-dye flavoring into baby's antibiotic-- so she doesn't spray it back in my face (1st ever ear infection)
- Homemade protein drink for baby, since no one is eating this morning
- Grab clothes from dryer, load up both machines. Doorbell-- Speech therapist is here.
- S-bear is willing to participate, so get Roo occupied with constructive project & baby gets vitacocktail.
- In & out of therapy with S-bear while therapist does reassessment. Printing data sheets for therapy.
- Reoccupying Roo & comforting baby who seems to need extra love today. =>
- Finish folding basket of laundry on floor with SJ on lap & discussing goals with speech therapist, before she leaves.
10AM(ish) I think?
- Defuse 3 sequences of fighting b/t twins with timeouts & lots of crying (where's the earplugs?)
- They want to eat, make Roo & baby fruit smoothie. Roo still doesn't want to eat... S-bear refuses the crackers he asked for.
- Baby wants to go outside & cries when she can't (this kid has some pipes!)
- More laundry folding & organizing baskets to go upstairs.
- Books for Sbear, playhouse for baby & Roo is playing with word game. They are quiet-- time to run.
- Strip twins sheet for wash. Sort adults laundry.
- S-bear & Roo fighting again, not really-- he is just extra sensitive & she's domineering as usual. Aaaaccckkk!
- Change & cuddles for baby. LOL- she found & donned a stocking cap with braids down each side & fluffy pom-poms on top, plus clean socks from my laundry basket on her hands.
- Setup Spongebob kids basketball hoop, get out an old-new parrot Fur-real toy, and the Farm Bingo (can ya tell we're looking for novel entertainment).
- I want "Chhhhhhhhhhhhhiiiiiicken!"- Ok, S-bear declares lunch early. Roo won't eat this time.
- Cleanup.
- 2 phone calls while disarming arguments (insurance co. & therapy center)
- answer 4 waiting texts.
It's 11:00AM(ish)-- and I'm done with the experiment. No time! I'm hungry, gotta pee, & need to brush my teeth (I know, so gross). Bet you're disappointed.
The sun is out though-- may I have an AMEN!
5.11.2010
The reality of this life-- WARNING - RAW & UNCENSORED
We have been immersed in special needs since the beginning of our parenting career, now 6.5 years ago. Initially, it was difficult, but we acclimated and forged ahead in the spirit of loving our then only daughter because she was our gift. As we were blessed with more children, we never imagined the magnitude of what would transpire as our babies began to systematically regress into the world of Autism. Facing what we do each day now, makes the days surrounding Bella’s new birth, even with her then myriad of health issues, in a word - simple. That says a lot, because really Bella’s birth was anything but pleasant; within the first 3 months, she had been hospitalized nearly a month prior to her open heart surgery for failure to thrive which was secondary to the state of heart failure she was born into. We were on complete quarantine to protect her from dangerous viruses & bacteria. Following heart surgery, failure to thrive, recurring infections, renal complications from surgery, etc were the norm in caring for Bella. Those times seem simple to us now, because now we are caring for 4 children whom have complex health issues with one condition in common—Autism.
This journey has been tumultuous and draining on all fronts: physically, mentally, emotionally, financially and also on our marriage. My husband and I continue to try with every ounce of effort we can summon to provide with all four of our extraordinary children every day. Unfortunately, these past years have taken a direct toll on us individually from a health standpoint and I feel it important to be quite direct about this. It has been humbling and in some ways humiliating, not being able to provide for our own children what they need and deserve due to our own health limitations. My husband’s health is still very affected. We are trying to remain optimistic, but cannot help but be greatly concerned due to familial history of chronic health issues, like ALS and degenerative autoimmune diseases. My health continues to be challenged, even with medication and proactive measures to work toward improvement. To be frank, both my husband and I are full out exhausted individually and this in itself takes a large toll on our marriage.
It breaks my heart to put these words on paper, not because I’m proud, but because I love my kids (and my husband) more than I ever knew was possible and I will go to my grave knowing I’ve done everything possible to help them. I think most Mothers/Wives feel the same; only the gravity of our unique family dynamic is beyond comprehension for most. I can say this confidently, because I still at times have trouble wrapping my mind around all of what has become normal for our family, day in & day out. As I think of what has become normal for us—despite my typical optimistic outlook, I am disheartened. We live a completely isolated life within our own home, just getting by on basic care for our kids & trying to keep them from regressing further. The few relationships we have been able to maintain are in majority by phone and comprised of about 14 people, including: our parents (4), the kids’ educational team (4), (2) primary therapists for our kids, our primary family physician (1), plus (3) friends between the two of us how have remained even though they are long distance. It is beyond sad to me that I spend more time traveling to, from & in the treating physician’s office per month than I do with my husband alone. Furthermore, when my husband and I are together there is never a time we are not stressed about logistics of how to make our family work or strategizing how we will avoid marital failure, mental breakdowns, health disasters, or the simplest of details in life that are overlooked by most. We do not want this isolation or choose it out of preference; even when we plan to do things we know our family may enjoy, someone gets sick, or one/some of the children are otherwise unfit to participate, etc, etc. Yet again, 4 children in 4 years, all with Autism about sums it up.
We are now full speed ahead on proactively treating the accompanying health issues each child has and doing everything we can to learn about this aspect & how we can improve the children’s health alone, which should translate into a better quality of life for them. The irony is that in the mean time, my husband and I do not have a life. Certainly one that isn’t what we think is even close to sustainable long-term, as is. We are trying to gradually engage the children in all recommended therapies, but are simply unable due to the necessity of manpower, supervision & a depleted budget to hire helpers to carry out prescribed therapy interventions. I do not mean to be anything but honest here. We simply cannot sustain this current state of life we lead together. Forgive me, I have lost all ability to be anything but brutally honest.
Each child has a unique and complex set of medical needs; many of their symptoms are common & there is a clear pattern of autoimmune affect in each of their cases. The following are just a few specifics: Bella has been diagnosed with Hashimoto’s autoimmune disease. Roo’s renal problems are back in full force (regression in toileting abilities). S-bear and SJ have both been under treatment for recurrent bacterial & parasitic infections.
I spoke recently to a group of service providers at state Respite Coalition event briefly, while my husband came home to care for our children (because there is no one else). It was there, I told that group of providers, “I’m thankful each day to God that I’m married. I’m thankful each day He gives us another chance.” I said that because I know intimately the chances that my marriage may fail are a near certainty under these conditions, despite loving my husband greatly and our mutual commitment to one another. Going along with this, I live with constant fear of what will happen next or how I may fail: my children, my husband, myself. How will I protect them from abuse and neglect? How will I lead them by my positive example, when I am feeling so desolate myself?? – these and the worries of everyday life business literally keeps me awake at night.
Just last evening following nightly bathes the unspeakable happened. I was at home with the kids myself & while I was preoccupied with cleaning up after another child’s toileting accident, my 4-year old son outsmarted our secured double bolted exterior doors. In a matter of a couple minutes while I went up & down flights of stairs myself, he pulled a kitchen stool to the door to reach & unlock the high level lock exiting to the garage, somehow he got the truck door open & pushed the garage door remote inside the car. With the normal background noise in the house and my focus diverted, I didn’t hear the garage door go up. S-bear exited our home through the garage door. After immediately noticing him gone from the family room, I quickly searched the house to the normal areas where he’d likely be. He was no where & both the front & back doors were secured, so I ran to the third exit going to the garage. It was open, the car door & the garage door open as well—there was Bella standing on the steps in the garage. My heart literally leapt into my throat it was pounding so hard. I hastily deposited Bella back to the family room sofa with Roo & SJ. I tore back out onto the front lawn to look for S-bear; there was no one in sight down our entire street. I heard kids playing behind us at the main park & ran there praying he’d be there, too. I had to leave the other 3 kids in the house while I sprinted across the block to the park. S-bear wasn’t there & my screams of his name were unanswered. I yelled to an adult man adjacent to the park, in his back yard, asking him if he saw a little boy in an orange shirt. He hadn’t so I quickly told him our address & that he had Autism if he’d see him to please help bring him back. I ran so hard back to the house, asking God that he please have gone back in the garage. S-bear wasn’t there & I still didn’t see him as I looked all directions swiftly. I checked on the girls in the house again quickly, then I ran back out the garage scanning for anything that may lure him any certain direction. I was on the curb in front of our house & a neighbor came out her house yelling to me. She asked was I missing a little boy & I screamed “YES!” “He’s back behind our house at the lake” she hollered to me. By God’s grace she’d spotted him & told some other kids to go to him while trying to figure out where he belonged. He was barefoot, fresh out of bath in pull-up night-time diaper and pajamas. When I spotted him from the edge of the neighbor’s lawn & yelled out his name, he looked at me & then said “ducks” & put his feet to the water’s edge. He cannot swim I thought running toward him. Another adult came out, grabbed him & I yelled to her that he is my son, as I ran around the lake to them. When I got to him & scooped him up, she said, “We kept talking to him, but he wouldn’t respond. He wouldn’t tell us his name.” Through my tears I told her he had Autism, thanked her briskly explaining I had three unattended girls at home. S-bear remained fixated on the water, ducks & unaffected by my sobs as I ran carrying him home. My stomach has been in knots, my mind racing ever since. I lay awake last night going over the things that COULD HAVE happened & how could I prevent this from EVER happening again. He & his sisters are so innocent, yet brave to their detriment, gullible and easy targets in an unfair world. Even if this had been Roo (very high functioning – Asperger’s), she would be easily been coerced by a stranger, because she interprets things literally and doesn’t comprehend what it means to lie or that others are capable of harm when presenting themselves with a friendly nature. I share all of this with you, because this is our reality. This is our family in it’s most vulnerable place.
Even when things are in a rhythm, I spend my life as a parent, much like a wild-fire firefighter; I put one fire out & another erupts, and so on and so on. This marathon we’re running does not work in favor of my own mental health, my husband’s health, my patience, nor, my ability to care for the children, and the marriage, God has entrusted to us. I pray daily for my own strength, the strength of my husband, for my mental fortitude, for forgiveness of my shortcomings, and mostly for hearing what it is I am to do to provide for our family. It takes a village to raise a child, I’ve been told this on many occasions— well, I’m praying for that village daily. I know we will find it, as we always do-- just on God's timeline & delivery in the unanticipated.
This journey has been tumultuous and draining on all fronts: physically, mentally, emotionally, financially and also on our marriage. My husband and I continue to try with every ounce of effort we can summon to provide with all four of our extraordinary children every day. Unfortunately, these past years have taken a direct toll on us individually from a health standpoint and I feel it important to be quite direct about this. It has been humbling and in some ways humiliating, not being able to provide for our own children what they need and deserve due to our own health limitations. My husband’s health is still very affected. We are trying to remain optimistic, but cannot help but be greatly concerned due to familial history of chronic health issues, like ALS and degenerative autoimmune diseases. My health continues to be challenged, even with medication and proactive measures to work toward improvement. To be frank, both my husband and I are full out exhausted individually and this in itself takes a large toll on our marriage.
It breaks my heart to put these words on paper, not because I’m proud, but because I love my kids (and my husband) more than I ever knew was possible and I will go to my grave knowing I’ve done everything possible to help them. I think most Mothers/Wives feel the same; only the gravity of our unique family dynamic is beyond comprehension for most. I can say this confidently, because I still at times have trouble wrapping my mind around all of what has become normal for our family, day in & day out. As I think of what has become normal for us—despite my typical optimistic outlook, I am disheartened. We live a completely isolated life within our own home, just getting by on basic care for our kids & trying to keep them from regressing further. The few relationships we have been able to maintain are in majority by phone and comprised of about 14 people, including: our parents (4), the kids’ educational team (4), (2) primary therapists for our kids, our primary family physician (1), plus (3) friends between the two of us how have remained even though they are long distance. It is beyond sad to me that I spend more time traveling to, from & in the treating physician’s office per month than I do with my husband alone. Furthermore, when my husband and I are together there is never a time we are not stressed about logistics of how to make our family work or strategizing how we will avoid marital failure, mental breakdowns, health disasters, or the simplest of details in life that are overlooked by most. We do not want this isolation or choose it out of preference; even when we plan to do things we know our family may enjoy, someone gets sick, or one/some of the children are otherwise unfit to participate, etc, etc. Yet again, 4 children in 4 years, all with Autism about sums it up.
We are now full speed ahead on proactively treating the accompanying health issues each child has and doing everything we can to learn about this aspect & how we can improve the children’s health alone, which should translate into a better quality of life for them. The irony is that in the mean time, my husband and I do not have a life. Certainly one that isn’t what we think is even close to sustainable long-term, as is. We are trying to gradually engage the children in all recommended therapies, but are simply unable due to the necessity of manpower, supervision & a depleted budget to hire helpers to carry out prescribed therapy interventions. I do not mean to be anything but honest here. We simply cannot sustain this current state of life we lead together. Forgive me, I have lost all ability to be anything but brutally honest.
Each child has a unique and complex set of medical needs; many of their symptoms are common & there is a clear pattern of autoimmune affect in each of their cases. The following are just a few specifics: Bella has been diagnosed with Hashimoto’s autoimmune disease. Roo’s renal problems are back in full force (regression in toileting abilities). S-bear and SJ have both been under treatment for recurrent bacterial & parasitic infections.
I spoke recently to a group of service providers at state Respite Coalition event briefly, while my husband came home to care for our children (because there is no one else). It was there, I told that group of providers, “I’m thankful each day to God that I’m married. I’m thankful each day He gives us another chance.” I said that because I know intimately the chances that my marriage may fail are a near certainty under these conditions, despite loving my husband greatly and our mutual commitment to one another. Going along with this, I live with constant fear of what will happen next or how I may fail: my children, my husband, myself. How will I protect them from abuse and neglect? How will I lead them by my positive example, when I am feeling so desolate myself?? – these and the worries of everyday life business literally keeps me awake at night.
Just last evening following nightly bathes the unspeakable happened. I was at home with the kids myself & while I was preoccupied with cleaning up after another child’s toileting accident, my 4-year old son outsmarted our secured double bolted exterior doors. In a matter of a couple minutes while I went up & down flights of stairs myself, he pulled a kitchen stool to the door to reach & unlock the high level lock exiting to the garage, somehow he got the truck door open & pushed the garage door remote inside the car. With the normal background noise in the house and my focus diverted, I didn’t hear the garage door go up. S-bear exited our home through the garage door. After immediately noticing him gone from the family room, I quickly searched the house to the normal areas where he’d likely be. He was no where & both the front & back doors were secured, so I ran to the third exit going to the garage. It was open, the car door & the garage door open as well—there was Bella standing on the steps in the garage. My heart literally leapt into my throat it was pounding so hard. I hastily deposited Bella back to the family room sofa with Roo & SJ. I tore back out onto the front lawn to look for S-bear; there was no one in sight down our entire street. I heard kids playing behind us at the main park & ran there praying he’d be there, too. I had to leave the other 3 kids in the house while I sprinted across the block to the park. S-bear wasn’t there & my screams of his name were unanswered. I yelled to an adult man adjacent to the park, in his back yard, asking him if he saw a little boy in an orange shirt. He hadn’t so I quickly told him our address & that he had Autism if he’d see him to please help bring him back. I ran so hard back to the house, asking God that he please have gone back in the garage. S-bear wasn’t there & I still didn’t see him as I looked all directions swiftly. I checked on the girls in the house again quickly, then I ran back out the garage scanning for anything that may lure him any certain direction. I was on the curb in front of our house & a neighbor came out her house yelling to me. She asked was I missing a little boy & I screamed “YES!” “He’s back behind our house at the lake” she hollered to me. By God’s grace she’d spotted him & told some other kids to go to him while trying to figure out where he belonged. He was barefoot, fresh out of bath in pull-up night-time diaper and pajamas. When I spotted him from the edge of the neighbor’s lawn & yelled out his name, he looked at me & then said “ducks” & put his feet to the water’s edge. He cannot swim I thought running toward him. Another adult came out, grabbed him & I yelled to her that he is my son, as I ran around the lake to them. When I got to him & scooped him up, she said, “We kept talking to him, but he wouldn’t respond. He wouldn’t tell us his name.” Through my tears I told her he had Autism, thanked her briskly explaining I had three unattended girls at home. S-bear remained fixated on the water, ducks & unaffected by my sobs as I ran carrying him home. My stomach has been in knots, my mind racing ever since. I lay awake last night going over the things that COULD HAVE happened & how could I prevent this from EVER happening again. He & his sisters are so innocent, yet brave to their detriment, gullible and easy targets in an unfair world. Even if this had been Roo (very high functioning – Asperger’s), she would be easily been coerced by a stranger, because she interprets things literally and doesn’t comprehend what it means to lie or that others are capable of harm when presenting themselves with a friendly nature. I share all of this with you, because this is our reality. This is our family in it’s most vulnerable place.
Even when things are in a rhythm, I spend my life as a parent, much like a wild-fire firefighter; I put one fire out & another erupts, and so on and so on. This marathon we’re running does not work in favor of my own mental health, my husband’s health, my patience, nor, my ability to care for the children, and the marriage, God has entrusted to us. I pray daily for my own strength, the strength of my husband, for my mental fortitude, for forgiveness of my shortcomings, and mostly for hearing what it is I am to do to provide for our family. It takes a village to raise a child, I’ve been told this on many occasions— well, I’m praying for that village daily. I know we will find it, as we always do-- just on God's timeline & delivery in the unanticipated.
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