A Day in the Life of An Autism Mom
By LJ Goes
Last week I packed up my three small children, Madeleine, Noah, who suffers from autism, and Liam, along all their accouterments, in preparation for a busy day. Our first stop was the drive through window at Starbucks. As we pulled up the mom of one of Noah's classmates was preparing to end her shift as a barista. This woman left her corporate job several years ago to be a stay at home mom. Of course, that was before she knew her oldest son would suffer from a debilitating neurological disorder and her youngest would get autism. Despite her precise demeanor, professional mannerism and acumen for business, she now serves lattes so her family can have access to medical benefits. She tells me her eldest was just hospitalized for an "episode". Thanks to Starbucks, she will be paying $3,000 of the $45,000 her son's stay in the hospital cost their family. She's not sure if or when, he may need to be hospitalized again. I don't know her that well but I can tell she was probably the life of the party back in the day. I like her. We chatted briefly about our children's teachers, therapy, and speech pathologists before we were off to the park.
Once there we happened upon one of Madeleine's playmates from her old school, and her aunt. Quite randomly, and in keeping with the idea that God has a tremendous sense of humor, the aunt told me about a course she teaches in nursing. She recently had her students write papers debunking Jenny McCarthy's, "goofy theory that vaccines cause autism". The class delivered, successfully refuting Jenny's assertions. The teaching nurse was very pleased, indeed. I was flummoxed as I thought medical training was about observing and reporting, with a foundation in science--the proving or disproving is the end result of that process. Isn’t that what we all learned in 8th grade science? The sort of premeditation this woman described seemed better suited for a court room than a nursing college. Curiosity got the better of me so I inquired, "Did you know that Jenny McCarthy isn't a medical professional, but rather, a model and an actress?" While Jenny is indeed a lovely creature, I have never heard her claim to be a medical guru. I commented that perhaps, in the future, as nursing is indeed a branch of medicine and medicine a branch of science, she may want to have her students read actual scientific studies for their papers, rather than memoirs by Hollywood personalities.
I suggested Thimerosal Neurotoxicity is Associated with Glutathione Depletion: Protection with Glutathione Precursors Neurotoxicology, Jan 2005. by S. Jill James, PhD [University of Arkansas]. If that study is a bit too heady, there's my all time fave, Hepatitis B Vaccination of Male Neonates and Autism, Annals of Epidemiology , Vol. 19, No. 9 ABSTRACTS (ACE), September 2009: 651-680, p. 659, by CM Gallagher, MS Goodman, Graduate Program in Public Health, Stony Brook University Medical Center, Stony Brook, NY. Although locked and loaded with one more in my arsenal I had to switch gears. Noah began to meltdown in the volleyball pit.
He took off running, headed straight for the pond. He is an incredibly fast runner, especially when he is in meltdown mode. I caught up to him, just barely snagging him by the cuff of his shorts. We both fell to the ground where he kicked me in the face, pulled my sunglasses off my head and threw them into the water. My nose began to bleed where his nails made contact. I carried him back to the car while he pounded my neck with his free hand. Noah weighs 47 lbs. While this happened, the teaching-nurse-aunt stood slack-jawed while my other two played nicely on the monkey bars. Tough for them. Meltdown in progress. Time to go.
As a rule of thumb, I am generally forgiving of folks who think they know everything there is to know about autism, chronic illness, and vaccines. It has been my experience the stronger the compulsion to opine, the more ignorant of the facts, especially for those holding medical certifications of some sort. To harbor anger toward this particular nurse seemed absurd. Anger takes energy, which is in short supply given the physical, mental and emotional demands of my job. Also I can't really bring myself to get angry at a person who has cancer. She can't help it. Most folks in the medical community have let their organizations and affiliations (cancers) do their thinking for them for so long, they don't know how to think for themselves anymore. No amount of logic or non-pharma funded science will convince them otherwise. They know what is happening. Everyone knows what is happening. But if they admit it, they render themselves obsolete. If this truth is allowed to enter the public consciousness it will lead to the unthinkable. Public humiliation. It's better to be safe, keep hurting kids and look away. Burning flesh, family after family, mass genocide...no one saw a thing.
As I secured my children in their seats, the teaching-nurse-aunt did what most folks do; she made excuses for my son's truly horrific behavior. "Oh, looks like he's had a rough day--poor guy, summer can be so tough." she said. Oddly enough, she also looked like she was going to cry, and unless I was mistaken, her near tears seemed to have been for me. I guess watching autistic events unfold can be pretty traumatic for some people. Even so, I will not have others making excuse for my son's behavior. "No," I said, "this is pretty much every day for us." I told her to check out the studies I mentioned, as well as 47 others at Adventures In Autism. She nodded and stared blankly as the kids said their goodbyes and we drove off.
Given the magnitude of Noah's meltdown, I figured the rest of our errands would have to wait. I brought the kids home and prepared an early lunch. "We'll try to help Mrs. Goes but you know (heavy, punishing sigh) we need to know when you are going to make these changes." A woman from the bus company that services Noah's school district labored into my ear. How I look forward to these weekly calls. I apologized for yet another upheaval in his summer therapy schedule and prostrated myself, "Could we please get him on an afternoon bus, after all? I really appreciate how accommodating you've been, and I'm so sorry for the inconvenience." "Well, you just need to be more aware, Mrs. Goes."
Next order of business, the to-do list. Find someone to watch the kids so I can go to my friend's father's wake tonight, get an appointment with the neuro-feedback doctor, update Noah's list of motivators, get to work on his fall IEP, laundry (9 loads), order lab test kits, clean feces off walls in the foyer, the upstairs bathroom, and bedroom rug, make payment for swimming lessons, get car serviced, find fruit and vegetable co-op, potty train Liam, tackle mold issue in the master bathroom, clean toilets, make flight arrangements to see digestive diseases specialist in Texas, fight with BC/BS about getting mito tests covered.
What to do first? Apparently, answer my Blackberry.
"He told me I was misinformed for even questioning vaccines!" my hysterical friend screamed above the sounds of quarreling children in her car. "He said, I will have to find another doctor if I am going to choose a delayed schedule! I don't think he even read the studies I brought him! Can you believe this?" I was really into prioritizing my list and as this was my second call of this nature in as many days, I was not delivering the much desired outrage my girl was seeking. "So, get another ped." I quipped. "He's failed you. He is telling you he is not capable of caring for your kids any longer." "But, it's been 10 years!" She yelled. "People get complacent in marriages and in their jobs, why would you think medicine is any different? He is not interested in doing the work. He had two choices. Read the studies and act, or deny they exist and get rid of the person who knows the truth and might share it with his other patients. He is interested in self-preservation, not healing children. You gotta find someone else." She became annoyed with me here and frankly, I don't blame her. My search for competent pediatricians is unending. Humble requests for appropriate testing on Noah are often met with hostile and immature responses from the most respected physicians. "Now, Mrs. Goes, who told you you need this test? Have you been googling again? That's an awful lot of blood Mrs. Goes, are you sure you want to do that to your son?" After a titre revealed Noah was not immune to polio despite being fully vaccinated for it I requested a titre on Mads as well. The doctor proclaimed, "So after all those shots you want to come back for a blood draw? That seems a bit excessive, Mrs. Goes."
When doctors berate you, they use your real name. When they want you to stop asking questions they don't have the answers to, they call you "mom". "We give these shots everyday, side effects are super rare, no need for concern, mom!" It's a statement designed to assuage your fears and shame you for questioning their superior knowledge. Which, sadly, according to the AAP's own statistics, 54.1% of the American parenting population now knows, is not so superior after all. I listened as my friend quickly progressed through the several stages of grief that accompany a break up and tackled my least favorite task, the laundry.
In addition to the revolving door of therapists we have traipsing through our home on a daily basis we just added a life-skills specialist to the payroll. She starts this week. This young lady will be working on everyday tasks with Noah, doing repetitive exercises, helping him dress himself, preventing him from shredding his food, helping him identify when he has to go to the bathroom, teaching him to hold a fork and a pencil, and preventing him from harming himself or anyone in his vicinity when he gets frustrated. The hard part of this job is the physical labor and the corrective measures required to keep him safe. We live on a pond, one of his favorite obsessions. He likes to overturn furniture, jump on tables, and launch himself off the kitchen island. The extraordinary and constant stress of his overtaxed central nervous system makes it very difficult for him to control his actions. This woman has energy, a degree in special education, and the patience of a saint. I looked around my laundry room covered with sheets and toddler clothes soiled with bacteria-laden feces (a bright yellow, foul smelling sandy substance) and wondered how long she would be willing to stay with us. More importantly, if she can handle the train wreck that is our lives, how long will we be able to afford to pay her?
Sorting through the linens I found a pair of shorts whose original color I could not determine. They were beyond saving so headed out to the hazardous waste bin to dispose of them. Noah's hawk-like senses determined a point of entry had been compromised the moment I turned the knob. He flew down the stairs and appeared behind me before I even reached the bins. Now is a good time to mention that I am 40. I keep hearing 40 is the new 30, but I think that's only true for people who do not have small children. Except for rare occasions like date night or the near-extinct girls' trip, I feel every bit of 40. The garage door began it's ascent and Noah darted past me like Dash from The Incredibles. At the same time, The FedEdx guy approached our cal de sac, driving way too fast. Adrenaline pumping, I dropped the shorts and sprinted after Noah. The driver spotted my flailing arms and slammed on his breaks. I yanked Noah out of his path and carried him back toward the house as he screamed and pummeled me. As the driver exited his vehicle I noticed he was rolling his eyes and laughing. Laughing? Seriously? I asked him in my most polite voice if he could slow down in the future. He held up his open hand and pushed the air down to dismiss me. Just another crazy mom who can't control her kid. When are these spoiled suburban moms gonna learn? He seemed to me the perfect picture of a misogynist. I looked at Noah--laughing, very much alive and beating the sh*t out of me, and convinced myself this guy was not worth my energy, which was quickly waning. I still had so much to do.
Many phone calls, a trashed house and several hours later I arrived at my friend's father's wake. He was a 90 year old WWII fighter pilot, married 67 years. He fathered 13 children. As I browsed the pictures that told his life story my gaze landed on a photo of him and his wife with all 13 kids between them. If they were a modern family, odds are very good 6 or 7 of those children would be afflicted with chronic illness or a life-altering neurological disorder. I paid my respects to my friend, the youngest of the 13, and the 98 lbs. mother of a 235 lbs. adult son with Aspergers. I prayed for her on the way home and filled the soundless space of my car with random thoughts. How I long to escape this situation at times. Life is so much harder than I ever imagined it could be. How do I make it better? Maybe I could pull the car over and sleep for just a few minutes. No, I had to get back.
"Ms. LJ, I got a tarantula!" My neighbor's ocean-eyed son yelled into my open car window as I approached the driveway. "Cool!" I affirmed as he danced around with the massive stuffed toy. His mom took notice and walked over to me. "Hey, glad we caught you, do you have a sec?"
From that point the sequence of events is vague at best. I remember something about a friend on the west side...twins...both developing normally...sudden regression...diagnosed with autism...did I know anyone who could help her? I listened to her speak, her face scrunched up and concerned, as I watched her neurotypical boys running and jumping between our front yards. The heart-breaking reality of Kawasaki disease that hit the proud owner of the arachnid only months before, a distant memory. I listened as she told me her friend was overwhelmed and scared and getting services after an educational diagnosis. Something came over me. Tunnel vision, the sweats, weak knees...So many innocent kids. So many precious babies. So many lies. Everyone pretending it's not happening. After hastily excusing myself I rushed into the house and evacuated the contents of my stomach into the powder room toilet. Wave after violent wave of sickness washed over me as my mind spun out of control reliving story after story of children harmed by the very institutions and people who are supposed to heal them. Images of my dear friend's infant daughter flashed before me. Her tiny little body stiffening and seizing repeatedly after receiving the dtp vax. Unceasing, and unrelenting, that vaccine-induced seizure disorder claimed her precious life. God, I wish I never ever saw the video footage of that first seziure. The palpable rage of an entire generation of American children silenced and injured by greed and privilege swept across my convulsing jaw as my fists involuntarily pounded the floor. Dizzy, disgusted and empty, I leaned back breathing heavily through remnants of spittle. I closed my eyes expecting tears, but none came. Then a strange haggard voice whispered from inside the pale yellow powder room walls, "I am so, so sorry, my precious boy. You needed me to protect you. I just believed what I was told. No questions asked. I did not read the MSD sheets they handed me. I...did...not...read...them. I gave them your life when I signed those papers. I went back, over and over again, watching you get sicker and sicker. Sweet, sweet Noah, please forgive me. You matter. Your life matters and I love you more than anything this world could ever have to offer me. I will spend the rest of my life making it right. I promise you. Forgive me, son. Please forgive me."
I've always considered life a divine comedy of sorts and this moment only reinforced the idea. Beneath my crumpled form lay a pristine copy of Departures magazine. The words, "Global Style, Tom Ford's Tough Luxe for Spring" were emblazoned on the cover, set atop a buttery soft euro-style bomber jacket. Available immediately upon request for the obscenely rich, at a reasonable price of $10,130.00. I often leave the house in clothing I have slept in. A shower is just not a daily certainty. Appalling, I know. It really was quite a spectacular jacket. I flipped open the cover and perused the glossy pages of exotic locations showcasing perfect humans looking forlorn and blissful, like they'd just had or were about to have, the best sex of their entire lives. Man, the services I could get for Noah with $10,130.00. I cursed the insipid, out of touch pharmaceutical lobbyists who actually spend that kind of money on clothing. Then I remembered my life before autism happened, my shoe collection and ridiculously expensive handbags, the traveling that qualified us to receive free issues of Departures in the first place--and I took back the curse. I had a good hard belly laugh at the absurd and noted things are never really what they seem. Finally the tears came. I washed my face, brushed my teeth and headed over to my computer to get the necessary resources to my neighbor's friend. I had work to do. Because at the end of the day (which thank God, it FINALLY was) besides the barf and the wake, this was just a typical day in the life of an autism mom.
Dear Parent of a Newly Diagnosed Child with Autism,
I am so very sorry I have to welcome you into our vast and quickly growing club. Please visit www.canaryparty.org and get yourself up to speed...
LJ Goes is Managing Partner of the Misuta Project, LLC., a Contributing Editor to Age of Autism, and Executive Board Member of the Illinois Canary Party
autisim with severe brain injury is a death sentence cousin.it is a death sentence to the parent that stays to do the work.no contact by most of the family.our children are so helpless and they cannot help.our lovelies break their heart.you only need to get through the next 20 mins.you can do it.make sure you take the time to cuddle your children in the chaos.make sure you pray for them and yourself and their brothers and sisters.when we are weak GOD will help.my child is 32 yrs old.I am stronger and fitter than ever and can clean up the most dreadful mess in seconds flat.good at it now.I only do what is good for the children.everyone else will have to wait.when some expert begins their usual ,invite them to pop in.they either turn up and you learn something or they shut up and crawl back into their safe little hole.do what you can live with and ask for help.most folk want to but are not sure how.tell them.I NEED A NAP WITH HAPPY CHILDREN WHEN I WAKE UP.NEED ONE PERSON FOR EACH CHILD AND THREE FOR THE HOUSE.TWICE A WEEK.all I can say is it gets easier as you learn more .the more silverbeet.beetroot, and beans and walnuts my son eats the calmer he becomes.diet matters.be safe.AND MAY GOD BLESS YOU.VICKI.
Posted by: vicki glanville | April 24, 2015 at 11:41 PM
Hope and Susan thankyou, thankyou, thankyou
for waking me up.
I have been selfish -
I feel so ashamed.
I did get my kids "Almost ALL" of those vaccines that were recommended back in the 80s, all except those last two whooping cough shots for my son since his stroke six hours after the DPT shot.
I guess I could blame the two peds of his for recommending my son shouldn't get anymore of the whooping cough vaccine. I guess at some point even they can see a vaccine reactions. I mean after the heart inflamed, heart murmur and swollen left ventricle of heart from the first, and the passing out, gasping for air, 105 from the second.
I also did not get my son his tetantus shot at age 14 either, did you know it really is a DPT shot but they don't tell you that?
I did not get him the Hep B that was required at age 14 either by the way.
Now my duaghter did, she got that Hep B - not in highschool - it was not recommended at that time (is that okay?), but she got it in her 20's- when she was older. Do you think that was okay?
After she got it though that old stiffness returned only double in severity - like she had when she had her fourth DPT shot and came down with Kawasakis (105 temp). The Hep B caused her SED rates to soar again,and she began not being able to sleep for days. The doctors recommended what she had been taking already for years and that was some sort of anti-inflamatory like asprin and ultram, that is about all they have.
She has always been such a good person though, always wanting to work with kids like her brother, validictorian of her classs and like a good little soldier never selfish. She is also a registered nurse at a hospital, and they recommended the flu shot were she works. Never one to question authority she took it. See, does that make you happy, is that okay?
I found her in a psychotic state cutting imaginary bot worms out of her arms with a not so imaginary scaple, on Mother's Day of last year.
But after reading about what a dumb ass I have been and selfish and all that; you have convinced me! Yes convinced me to get to that doctor's office and get that Hep B and tetanus (AKA DPT) for my son and maybe the flu shot, and maybe that Hep A, I think it is available now. Oh, and that Gardisil thing - for to prevent cervical cancer, I heard they are recommending giving it to boys now, right? He is 25, will never marry, but well it is recommended.
Posted by: Benedetta | August 28, 2011 at 09:48 AM
And again, I say stop attacking me. 'Dumbasses'? Honestly. It gets us nowhere, and it doesn't stop me saying what I think. You want me to read and learn more? I have been reading and learning autism for over twenty years. I have been living and breathing autism my whole life. Not that I ever have to justify myself to you, or to anyone. If anyone is being a sheep here, it's you, Channa, for simply subscribing to what everyone else here thinks. Good grief.
Posted by: Susan | August 28, 2011 at 02:06 AM
when i hear the rage in the dumbasses words about how we are evil parents to deny our kids what the medical community has deemed safe..it reminds me of all the hoorible calamities thruout history.
the halocaust millions of people were killed because it was necessary for the greater good according to hitler and the people of the country for the most part defended this because they knew only to follow their leaders not question them.
as for getting wooping cough? it is not always a life sentence. but autism is always a life sentence.
why should my son have his life taken away on the chance he might get wooping cough. and who says vaccines prevent wooping cough?
read and learn more susan. try and use your brain and stop following like a bloody sheep.
Posted by: channa | August 26, 2011 at 11:56 PM
With respect, I am not seeing a willingness to consider different approaches here. What I am seeing is a group of people convinced that their kids autism was caused by vaccines. If I am over-generalising, I apologise, but this is what I'm observing. It has been documented for years that autism is not one condition, it is a spectrum of conditions, with a myriad of causes. I absolutely accept that vaccines can cause side effects, but severe ones are incredibly, incredibly rare, and I think vaccines are over-blamed when it comes to autism. Dietary intolerances can be attributed to a lot of the symptoms I have seen you guys talk about, and this may not have anything to do with vaccines. All I'm saying is that vaccines may not be the sole problem here, and that there actually may be a lot of different causes. Also, some regress into autism, yes, but some are born with it - hence the vaccines can't have caused the autism in those cases. Attacking me gets us nowhere, and is actually really offensive. We're all fighting for the same cause here - to help the people we love that have autism.
Posted by: Susan | August 25, 2011 at 08:26 PM
Susan,
Your comments are selfish and show a poor understanding of the issues of vaccine injury and autism. Coming here, like a bull in a china shop, will not make your statements true, nor make any new parents run to vaccines as a solution.
A comment like this:
"remember that everyone deserves to feel wanted, loved, and appreciated in this world. And also remember that autism is not a death sentence." -- shows poor judgement and a disregard to every parent who will give their right arm for their child to feel accepted, loved, safe YET also, Susan, have their child live their days without copious diarrhea, chronic constipation, reflux, arthritis, seizures, migraines, chronic viral infections, fevers, GI inflammation, brain swelling, recurrent strep infections ... autoimmune disease.
This one shows your lack of compassion ... and maybe some type of loyalty to the medical industrial complex -
"isn't is better to have a condition that, with early intervention, one can manage to a degree, as opposed to being likely to contract thing like polio and MMR"..
Manage to a degree - defined as a lifetime of being in diapers, your immune system wiped out, your mitochondrial never functioning properly,sensory overload via vision, hearing, taste, touch,olfactory, brain swelling caused by a chronic encephalitis that then produces seizures now or when the teen years come as the endocrine system is also dysfunctional, food allergies, nonverbal,OCD, tics, etc etc.
Manage to a degree, Susan, is offensive, narcissistic and shows that your calling card here is not as a seeker of truth but a defender of harm.
Posted by: Teresa Conrick | August 24, 2011 at 10:00 PM
I have found this article interesting. I would just like to comment on one issue that I have noticed in some autism comments, the idea that there is this divide between autism then and now. While things really seem to be intolerably difficult for many parents of kids now, I would like to point out things were not so great in the good ole days. As an adult with a history of Aspergers, I can't even begin to count the number of doctors I have seen in my life. The number is astronomical. I remember years of stomach problems, throwing up every single day until I developed the GFCF diet on my own through experimentation that went on for years. The diet fixed my stomach problem almost completely, thank God, but there was no book or DAN conference to turn to. No support groups, no online information. You were on your own, not too great I assure you.
I do get annoyed with the idea that anyone eccentric is the old autism. I assure you though there are people who had really terrible issues. There are more children ill now, that is true. I think there is more help now too. I can't help but feel a bit envious when I notice how much help and support is around lately.
But I don't think there is this great divide that some people feel there is. Things were not that great in the past, nor was it easy for everyone, I assure you. My personal feeling is that it is the same problem (mercury and/or vaccinations) but just more of it.
Posted by: Lisa | August 24, 2011 at 09:04 PM
Susan, I take great horror in the statement you made
"We are not going to get anywhere in this world, or with these kids, if we don't consider other approaches. And those who have such a negative viewpoint of autism are going to further disable those with autism. We need to stay strong, and positive, and look for ways to cope and help these people. Take care everyone, and remember that everyone deserves to feel wanted, loved, and appreciated in this world. And also remember that autism is not a death sentence. Learn to cope, and be good role models for those in your lives that have autism."
I will start with:
"We are not going to get anywhere in this world, or with these kids, if we don't consider other approaches. And those who have such a negative viewpoint of autism are going to further disable those with autism."
AoA is JUST ABOUT this exact thing, that here, we DISCUSS ALL sorts of "approaches" you mention...including the regressive cases of "Autism" which, YES, have been medically documented to have been caused by a Vaccine/combo of vaccines and/or combos of ingredients within those vacccine...and there ARE SO MANY DIFFERENT areas and combos..including the health of the child when they recieved that vaccine(s)...and guess what? There are ALSO parents/professionals/others here who are advocating or wanting to educate/share about their loved ones who have Autism that DID NOT have VAccine(s) as part/all of the causation of their loved ones Autism.
Here at AoA we do not push away others that do not believe in just one thing or another, we ALL respectfully put our minds and experiences together to share and hopefully change the lives of our loved ones and help prevent any future injury/pain/discrimination of any other baby/family in the same situation we were prior to our childs regressions or development of Autism...REGARDLESS of Causation.
What AoA is NOT about, is putting one person down for their personal experience or their believes. I can not and will never tell another person or another parent or another mom like me what their child did or did not go thru, what did or did not happen in front of their own eyes, or what has been medically prooven/diagnosed with their doctor, in their medical files...and the majority here at AoA all feel the same.
Sure, its of course Natural to debate and to differ in opinion, however, the issue here, and I think why you have gotten such a reaction, is because your posts are awfully disrespectful...
Disrespectful because of this type of comment:
"And those who have such a negative viewpoint of autism are going to further disable those with autism"
..because here, we do NOT have a negative viewpoint of our loved ones with Autism, not even CLOSE!
WE HATE what has happened to our kids, THE PHYSICAL and AWFUL PAIN they go thru everyday, the GI issues ,one of my sons hasnt had a formed bowel movement since his regression, after his VACCINE INJURY, and that was at about 17 months old, he is now 7 years old...its gotten a bit better since we have been changing diet and doing other things to help him improve his physical health..but to see your child moaning and groaning like he is passing a super concrete bowel movement the size of TX, but only to find out its not, its soft and liquid BURNING him on the way out...EVERYTIME HE GOES...several times per day...
ANYONE WHO LOVES ANOTHER WOULD HATE THAT and NOT want that for their child...
I could easily write more about the several other medical issues that our boys suffer from each and every day, thats been labeled "Autism"...
The "Autism" my boys have is not JUST what others think Autism is..or JUST what Autism used to be...our kids today have so many painful health issues resulting from so many different things...
And to come here and say:
"We need to stay strong, and positive, and look for ways to cope and help these people. Take care everyone, and remember that everyone deserves to feel wanted, loved, and appreciated in this world. And also remember that autism is not a death sentence. Learn to cope, and be good role models for those in your lives that have autism. "
...well coming here and giving US a lecture or telling us or insinuating that we do not LOVE or CARE for or RESPECT our children/loved ones with Autism BECAUSE we are looking for ways to EASE their physical pain and looking for ways to help them become HEALTHY again, ways to stop their PAIN FILLED days, their SENSORY OVERLOADS that disable them...well, thats just plain WRONG...you obviously then have not read the full posts here, have not taken any time to really understand or fully get to know what we stand for, what we are doing, and WHY we are doing it.
WE ARE NOT looking to CURE a personality trait...and I am DEAD TIRED of hearing someone who may have known someone or knows someone with a mild form of Aspergers or anyone who worked with or lived with or loved someone with the 'autism' of the 50's-80's where it WAS just a behaviorally issue, where there are 'just' personality quirks and such...HECK, I would TRADE Aspergers or the old-school 'autism' for what my boys have and what so many of the kids today, the majority of the kids whose loved ones and parents and professionals post here at AoA, what WE are all expriencing, I would HAPPILY have my boys 'just' have some quirks and some social issues...but sadly, its FAR FROM that ....and I would suggest, if you are not willing to see ALL ASPECTS from ALL AREAS of the Autism spectrum INCLUDING ALL OF THOSE here at AoA whose loved ones DO HAVE MEDICALLY DOCUMENTED VACCINE INJURIES, or other various immune system disorders/brain damage/etc from vax or other environmental exposures...whose kids live with PAIN and SERIOUS physical health issues everyday ALL DAY, then you MUST not tell us we DO NOT LOVE OUR KIDS, or that we DO NOT RESPECT our kids...
...all of us here would DIE for our kids to be pain free and healthy...and we are not talking about personality quirks or social issues as being 'unhealthy'....and that,I am afraid, is exactly what you think we ARE doing here...calling a personality different than the norm...as unhealthy or something that needs to be cured....and that is WOEFULLY misinformed,and if you choose to continue to take part in our community here, and not educate yourself aobut us, or take time to REALLY Read and KNOW what we are, then you will be purposefully ignorant and sad to say, unwelcomed here...because WE DO LOVE OUR KIDS, and we work hard fighting everyday to makesurethat our kids are wanted,loved, and appreciated by the world outside of our family..because within our family,there is NO QUESTION that our children wouldnt feel loved or wanted or appreciated...
And,one more thing, YES, for some of our kids there are SEVERAL VERY SERIOUS MEDICAL CONDITIONS that DO CAUSE DEATH in our kids....just try searching AoA for the various news story coverage about those who have died because of results of their vax injury OR EVEN from the symptoms (like wandering/escaping/etc)of our kids "Autism"...
And "Learn to cope"...oh man...I really hope you just really are naive and ignorant to what we are about here at AoA...because if you ARE informed and have educated yourself about us here, and you still are telling us to "learn to cope"...well, I just dont have words to describe my outrage ....again, I HOPE its just your mis-information about what we are about...
Angie
Mom to Ethan, Alex, and Megan
Posted by: angie | August 24, 2011 at 06:43 PM
So sad, because you have just reached into my brain and pulled out the description of our days as well..and so many more families like us! SAD because there are so many of us...with one, two (like ours) or three or more kids with "Autism"....this of course isnt including the other siblings that have other issues like GI/Immune/health/etc or other developmental delays/issues...sad.
You were brillant in your words, I have been trying to figure out a way to write our family and friends who have been so 'upset' that we have become so 'selfish' because we arent ACTIVE in their lives anymore...sure, I can follow up thru emails, FB or a phone call here or there, but its seemingly not good enough, that WE are the selfish and inconsiderate ones because we have had to cancel events on the last minute, or not even able to go to begin with.....SO many times I have tried to explain...but lately I have let it go, havent had the time or energy to be angry or sad, or even to continue to TRY to get someone else to understand when somedays I cant even understand what our lives have become....and somedays I just want to send a Big F-U you have NO IDEA type of letter....but this post, along with another great one a week or so ago here on AoA by another Warrior Parent, I think is a much better way to explain it...so THANK you for your time in sharing! ITs helping more than you can know!
Thanks to ALL of AoA, and ALL of the fellow Autism Community! We need to keep talking, yelling, and screaming and fighting for our beautiful children, teens, and adults with "Autism"....and for the millions of babies who still have a shot (pun intended) at being the HEALTHY PERSON whom God created them to be!!!
And I am SO THANKFUL for AoA and all of the wonderful blogs and related sites which help inform, advocate, FIGHT FOR, and scream and yell for our community when I am too tired to do so...we all have the days when we just.cant.deal.with.one.more.ignorant person/comment/etc....so I am Glad to have others here who are ON when I am OFF!
I dont know what or where I would be without the knowledge and support of everyone here!
Angie
Mom to Ethan, Alex, and Megan
Posted by: angie | August 24, 2011 at 06:01 PM
Susan exemplifies the statement, "There are none so blind as those who will not see."
Or listen, for that matter...
Never mind about genetic susceptibility, or hot lots, or kids' lab tests, or before-and-after videos, or government malfeasance, or biased reporting, or pharma influence. Slap an "evidence-based medicine" band-aid over everything to cover up the wound.
Posted by: nhokkanen | August 24, 2011 at 02:05 PM
I hesitate to ask; it seems you are extremely well informed and have traveled this highway hard but. . . . .Have you tried anything to raise glutathione? There is really good information regarding the connection between autism/ASD behaviors and low glutathione, inflammation and high metal toxicity. There is a significant body of evidence that supports this. At New Day Autism Foundation our goal is to offer support and advice about a scientifically valid approach to resolving autism/ASD behaviors. Go to www.newdayautism.org to find out more.
Posted by: Ken Newton, New Day Autism Foundation | August 24, 2011 at 12:56 PM
Jeannette Bishop: I've been reading AoA since day one, and yours is one of the best comments I've had the pleasure to read. Thanks!
Posted by: Sylvia | August 24, 2011 at 09:27 AM
Thank you, LJ for another emotionally intense article. I try not to think about all of the disabled children and young adults up my street and just off my street, around every corner. There is way more than the 1 in 100 affected children in my town. One could make an argument for environmental toxins, but one could just as easily make the case for too many vaccines given by the same pediatricians in the same general vicinity.
Doing a count of how many children require special services and how many have a little yellow school bus driving up to their homes, makes me feel dizzy and physically sick. I try not to think about that as I work to heal my children. I must stay focused and positive as I wonder what the future will hold for them, and what they will be able to achieve.
@ Sarah-- You obviously don't have any children as you would see brain damaged kids at every single birthday party attended, if you did. You would hear the ugly truth about the undiagnosed kids from their very parents-- complaining about their children's lack of focus, inability to read at grade level, and sensory and socialization issues you didn't even know their children had. You don't have to have a formal diagnosis, in order to suffer from a condition. The numbers of affected children are way higher than any statistics cited. All you have to do is open your eyes and ears to spot them.
Posted by: Not an MD | August 24, 2011 at 08:54 AM
Susan, for me your last message posted is extraordinary under the above article, but I'm not sure you read the post. I find frequently at AoA examples of parents who are both passionate advocates for their children as well as all children, all while carrying daily loads such as straightforwardly described above. Many are more familiar with the latest autism research and the physiological issues of our children than many experts. While not the focus of this site, I've found information beneficial to my daughter's health here, not to mention information that has helped me better protect her. I fight an inferiority complex sometimes when I'm here, but I'm learning to "cope" from these parents and more. Assuming you are not in the same shoes, I hope you won't have to do the same, but if your children do avoid the immune and neurological epidemics that have affected so many in the young generations today, I believe it will be in large part because of the advocacy of many AoA contributors, and love is the driving factor.
I've been thinking about your question(s). You are probably aware that some exposures cause significant health problems in some but not everyone exposed, cancer for instance, but the long answer to your first question is here abundantly in AoA archives.
You could also read about that "initial paper" and what "discredited by the medical community" means in Dr. Wakefield's book, "Callous Disregard." That paper only touched on one issue of concern regarding vaccines and autism, the use of a live attenuated triple virus vaccine, MMR. The full story I've followed for about 7 years now though it started much earlier and is nothing like the "mainstream media" version. Wakefield's work also had very little, probably nothing actually, to do with how I learned of the vaccine-autism issue, though he has probably made some answers to how to help my daughter possible.
The history of another element of concern is summarized pretty well in chapters 1-6 here:
http://www.putchildrenfirst.org/chapter1.html
A more detailed history is in David Kirby's book, "Evidence of Harm."
If you want to look further into thimerosal which is still in several vaccines, you might want to read "The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic."
A couple of research links also looking at mercury and autism:
http://www.ncbi.nlm.nih.gov/pubmed/21797771
http://www.ane.pl/showarticle.php?art=7021
A familiarity with what has occurred in regards with that one ingredient, thimerosal, might lead you to want to research other vaccine components. I would recommend looking particularly at the excessive levels of aluminum adjuvants still in the vaccine schedule and the poverty of research on the safety of injecting aluminum.
http://www.pbs.org/wgbh/pages/frontline/vaccines/interviews/sears.html
"When I found what the FDA had to say, I was actually very shocked. I found on the FDA's Web site that they very clearly limit the amount of aluminum that we are supposed to inject into hospitalized patients. They limit it to about 50 mcg [micrograms] per day, and they say any more than 50 mcg may not be safe for humans. So I thought, OK, that's interesting. So I decided to look at how much aluminum is in each vaccine. And what I found in each vaccine is that some vaccines contain as much as 650 mcg of aluminum. Some vaccines contain a couple hundred micrograms of aluminum. And if you add up all the vaccines together that all contain aluminum, that you give all at the same time to a 2-month-old baby and a 4-month-old baby and a 6-month-old baby, all the aluminum given altogether adds up to about 1,250 mcg for each one of those days. So I saw on one hand, there's 1,250 mcg in vaccines given to babies; on the other hand, the FDA says we should limit the amount of aluminum to about 50 [mcg] for adults, and only about 20 mcg for children. ..."
Perhaps you will find some of the above helpful if you want to research the issue.
Posted by: Jeannette Bishop | August 24, 2011 at 02:26 AM
Susan has got our goat on this question for sure.
Susan take a deep breath and let it out slow, take a little time to observe nature for your answer.
But I will help you if you wish?
Spina bifida was once claimed to be a genetic disease and it was around when I was pregnant with my second child. The baby doctor told me to come in and get a test done because they finally had one to determine if a fetus had spina bifida before it was born. I did not bother to get the test, I was having that baby, I wanted that baby, and did. A very healthy boy 7 pound and something, and he knocked the socks off of that AGR scoring thing. It took his third DPT shot to cause his stroke only six hours after to ruin his health but as far as Spina bifida, it turned out not to be genetic, but was caused by the mother at a certain time in early pregnancy not having enough folic acid. Can you imagine a lack of a vitamin in our over fed America! A shortage of a vitamin was causing a rather wide spread birth defect???? A claimed genetic disease was then really environmental.
Dioxins at one time were made by an herbicide plant in Michigan, and then they were washed down into the Tibbawassee River on into the bay of one of the Great Lakes. They stopped the production and release of dioxins, but some dioxins must still be around clinging to the soil particles, hidden away from the sunlight that would break the dioxin down because there are still numerous sightings of cross bill dead baby birds every summer. I know this personally because when I moved to Michigan, I took a gander and a goose to appease my teen age kids about moving three states away. Our geese stayed in the same lot, ate the grain I provided, they enjoyed pooling water from rains, melted snow and still - about four of the 24 eggs we hatched out had cross bills that first year we were up there. My daughter attended the University in the Bay Area, and took some type of bird class, and the bird professor said that it was not unusual to find cross bills. Why not 100 percent of birds or 100 percent of our goslings had cross bills? That is the nature of an environmental toxin. . All this depends on how much it gets and then if you add in the next generation of geese like we did eventually do – well there were even more cross bills!
Dioxins also has a list a mile long of different reactions that can occur in birds, as well as monkeys, rabbits, mice, hamsters, guinea pigs and humans. Yes, not everybody seems to have the same symptoms to dioxins, even humans.
Speaking of different reactions:
When they put the vaccine into the body it usually goes with the flow of blood, and that is mostly in the blood vessels. GH Goes, the author, of this fine article did mention Kawasaki’s disease. That is a vasculitisis disease in children. There are two types, the most well known type, has high prolonged fevers of 104 and up, red rash, really red tongue and lips, swollen lymph nodes, swollen spleen, the child usually ends up in the hospital near death with an IV stuck in their arm. This type from my observation of nature (my two kids) affects the heart. The other type is atypical, or incomplete Kawasakis, it too has high prolonged fever, but no rash, or; well --it is the same disease, in a way milder, but different outcome, and it seems ( again my observation- my son) to affect the brain more. Different but the same, an autoimmune disease attacking the blood vessels.
I could go on to tell you how this is linked to the mitochondrial in the cells. I could go into detail about how the mitochondrial can no longer break up the long chain carbs to make glucose which is the entire metabolism. Messing with the metabolism can bring on a lot of different reaction like an overweight child which there seems to be a lot of in this country – do you agree? The metabolism and the carb problem probably leads to diabetes, which there seems to be a lot of too. Then there is those autoimmune problems with the thyroid, which also seems to be a lot of in this country. Metabolism and energy which reminds us of ADD, or ADHD - are our kids so tired that they cannot focus and when they go at a job they are moving around "hyper" with no real purpose? They must be because we are giving them uppers to fix the problem. That also is a big problem in the United States.
But then I wonder if I wasted my time. Do you really want to know the answer to why there are not more kids with autism if they all have to take the same shots? Or are you just thinking you have got our goats on this question?
Posted by: Benedetta | August 24, 2011 at 01:30 AM
Thank you for your willingness and courage in sharing your family's journey with us. The truth needs to be told, whether it makes some uncomfortable or not! We appreciate you L.J.!!
Posted by: Lin | August 23, 2011 at 11:07 PM
Thank you. Your writing is precious. My daughter doesn't have autism, but she does have electro sensitivity. I get the same attitude, "if this is true, why aren't there more cases?" Because NO ONE WANTS TO ADMIT THE TRUTH. That cell phone radiation makes some people sick. Imagine the lawsuits. Thank you for sharing your life. I tell people all the time, Please do your research before you let them inject your precious baby with poison!" My heart goes out to every single parent who 's child has been assaulted by toxic vaccines.
Please keep sharing your stories. Our children are NOT collateral damages. They are the most precious resources we have. Every day I say: "the truth IS coming out." And every day, a little more makes it to the mainstream.
Elizabeth
Posted by: elizabeth thode | August 23, 2011 at 10:42 PM
I think what Susan was trying to ask is "why aren't there way more people out there with Autism. I cannot help but wonder how many would be enough for her? It is as high,or higher than 1 in 60 in some places.
I feel like someone punched me in the gut everytime I see,or hear of a new one,and that seems far too often for me.
Posted by: Gina Searle | August 23, 2011 at 08:57 PM
Trying to stifle my freedom of speech, Managing Editor? Just because I'm asking questions? We are not going to get anywhere in this world, or with these kids, if we don't consider other approaches. And those who have such a negative viewpoint of autism are going to further disable those with autism. We need to stay strong, and positive, and look for ways to cope and help these people. Take care everyone, and remember that everyone deserves to feel wanted, loved, and appreciated in this world. And also remember that autism is not a death sentence. Learn to cope, and be good role models for those in your lives that have autism.
Posted by: Susan | August 23, 2011 at 08:15 PM
Susan
Just to point out that the article I linked to linked in turn to other sources like CNN and CBS, the federal court - so you can check all of them word for word, by yourself.
Posted by: John Stone | August 23, 2011 at 07:59 PM
Susan, anyone who refers to autism, a worldwide epidemic crippling families, changing lives. hobbling school districts and soon state budgets as the "problem" in quotes is not worth the time or further energy of a response. Most us would take 4 weeks off to tend to chicken pox or measles over "the problem." No need to respond further to us. We wish you well. Thank you.
Managing Editor
Posted by: Managing Editor | August 23, 2011 at 07:35 PM
I'm not going to blindly believe the article you linked me to, because it comes from another website which seems to be staunchly of the belief that vaccines cause autism, so I'm going to question the objectiveness of the piece. It's very easy to post 'articles' on the internet which are not wholly accurate.
And I ask again, why aren't so many more people autistic if so much of the population get vaccinated? Why isn't the 'problem' so much more common?
And again - isn't it better to have a condition you can manage as opposed to an illness which can kill you, such as the very diseases which vaccinations set out to protect you from?
Posted by: Susan | August 23, 2011 at 07:14 PM
Susan
It is a bit of problem when government officials and agencies have already admitted that vaccines cause autism:
http://childhealthsafety.wordpress.com/2010/06/30/vaccination-causes-autism-%e2%80%93-say-us-government-merck%e2%80%99s-director-of%c2%a0vaccines/
Personally, I shouldn't have such faith in the "medical community" if I were you, not least for the excellent reasons Lisa Goes lays out in this article.
Posted by: John Stone | August 23, 2011 at 06:46 PM
Can someone explain to me why there's still this hell-bent conviction that vaccines cause autism, when the initial paper suggesting this has been discredited by the medical community, and found to be largely falsified? And that if vaccines cause autism, why there are way more people out there with autism? And isn't is better to have a condition that, with early intervention, one can manage to a degree, as opposed to being likely to contract thing like polio and MMR - which you can die from?
Posted by: Susan | August 23, 2011 at 06:34 PM
Thanks for this article. I am with you in that doctor search! But in the meantime I am so grateful for finding the RecoveryFromAutism group on Yahoo! Groups. We've been following the Cutler protocol for two years and seen amazing positive changes in all three of my boys. There is a light at the end of the tunnel. Take care!
Posted by: Jo | August 23, 2011 at 05:22 PM
RE: They know what is happening. Everyone knows what is happening. But if they admit it, they render themselves obsolete. If this truth is allowed to enter the public consciousness it will lead to the unthinkable. Public humiliation. It's better to be safe, keep hurting kids and look away. Burning flesh, family after family, mass genocide...no one saw a thing.
AMEN! This is exactly why the this matter will not be resolved without a long and costly fight.
Posted by: Adam M | August 23, 2011 at 02:10 PM
Thank you Lj! You've done it again...you reminded me I am not alone in this fight. Yesterday was a terrible day, worse than most in Casa de autismx4. We had a therapist walk out in the middle of her shift because I asked her to stop her excessive cell phone use during my daughter's therapy time. She informed me I could not tell her what to do with her personal property, my first thought was this is my house and my child, you have a job because my child has autism! But instead I restated my request and added if she didn't she could go ahead and leave and that is.just what she did.
Posted by: Kristen Seidenstricker | August 23, 2011 at 11:26 AM
Great Article. It is exhausting.
Posted by: Kym Grosso | August 23, 2011 at 11:18 AM
Terrific article, LJ. I felt nauseous when you wrote about it. So many people are accepting illness as normal. It makes me sick! (pun)
Posted by: Deb in IL | August 23, 2011 at 11:16 AM
WOW LJ, I can't breathe. How many times through the years I have had a day where it's everywhere, and then comes one more story...and I throw up. The damage done is inconceivable. I can't even answer the phone much anymore (request only email or FB), because the hours it takes to help these moms have prevented me from taking the best care of myself and my family over the years. It's tough to be the activist, the helper, the one with the brainpower to help others. But we do it anyway, and wouldn't have it any other way.
Posted by: anon | August 23, 2011 at 08:40 AM
and don't forget all the school health textbooks with a minimum of 3 pages on the glories of vaccinations. The education begins early. Thanks, Lisa. Loved reading this. I feel so at home. Maurine
Posted by: Maurine Meleck | August 23, 2011 at 08:19 AM