Reflections from the Battlefield
By Paige Went
For a year, I was grief. There's a saying that you're only as happy as your least happy child, and my least happy child was suffering and miserable. He talked about suicide when he was nine years old. I was doing everything I could for him, and it wasn't nearly enough. He was not only severely depressed, he was in constant pain. And so I was in constant pain. I didn't want to remember my old pre-diagnosis self. I couldn't even listen to music that had been a part of my life before the diagnosis because it was too painful—even assaultive. My sorrow so overwhelmed me that I tried to keep it tucked in a box. Once in a while the lid would crack open, but I jammed it shut because I was afraid that the box would engulf me--that if I started crying, I wouldn't be able to stop. Ever.
Most people report being dropped by their closest friends. That wasn't my experience at all—in fact, I dropped them. Their conversations suddenly bored me. Bake sales? Designer shoe sales? Really? I didn't enjoy being around people who didn't know. They seemed like innocent children. Sweet, but limited.
How I saw myself changed. Forced out of my very comfortable life, I was no longer a normal housewife. Fueled by grief and rage, I was a rebel with a tremendous cause. My ferocity was boundless; I felt like Sarah Connor in The Terminator. I lost weight, and my face started to look hard, and I liked it—a soldier should have a hard face, I thought. (I'm happy to report that I didn't start wearing combat fatigues.) My fury made me feel powerful—a welcome antidote to the helplessness I felt in the face of my child’s suffering. Something tells me I wasn't much fun to be with during that time. My husband is too polite to say this, but “humorless and monomaniacal” were probably appropriate adjectives.
I learned the joy of having war buddies. I was amazed at how many extraordinary people I met, but slowly I realized that autism doesn’t cleverly pluck out the extraordinary people—it’s that the demands of parenting a child with autism are so extreme that they make us extraordinary.
When we meet other parents of children on the spectrum, we don't even have to build a connection; it's so powerful, it's already there. The superficiality of the things that classify and divide us in life outside becomes apparent. I met one of the fathers from David Kirby's book at a Defeat Autism Now! conference several years ago, and I asked him how his son was doing. I can't remember his exact response, but he was warm and funny, and within three minutes of shaking hands, we were both crying a little, even while laughing. (I doubt that instant, profound bridging happens very often at cocktail parties.) Insofar as we instinctively crave connections with other people, autism is an extremely effective unifier.
Not everybody chooses (or is able) to fight this thing, but I think that those of us who do find our best selves in the process. This is the woefully inadequate gift of autism—a life with a purpose. The kicker is that it's bought and paid for by the suffering of our children.
Paige Wentworth is a stay-at-home mother. Her “least happy child” is now sixteen, and after a lot of hard work on both their parts, he's now a pretty happy, pain-free kid.
Truth be told, she misses her old, ferocious self a little.
Wow- did you ever hit the nail on the head! This so captures how I have felt since the diagnosis with all of the small truly non-sense things in life that the "average family" worries about (myself included before autism entered the scene). You did such a phenomenal job in capturing so many of the feelings in such a succinct but beautifully written article. Very powerful - thank you!
Posted by: Amy M. | February 02, 2009 at 10:31 PM
Great job Paige! Thank you so much.
This reminds me, when are we going to have our second Green Our Vaccines rally in Washington D.C?
C'mon Jenny McCarthy! WE ARE ready!
Posted by: Erika | February 02, 2009 at 07:00 PM
Taxi mom, read this page at www.liafoundation.org in entirety. Read symptom list, and how to test. You can go to my webpage also at www.lyme-autism.org This does not dismiss how vaccines can cause or initiate autism, however, it speaks of a precondition, since lyme borrelia can induce glutathione block, and oxidative stres, and or previous brain damage in utero. Since lyme is in the spirochete family, like syphilis, it is known that syphilis can cause autism in utero. Why not lyme? Read especially Dr Bransfields article, and or google my name Kathy Blanco AUTISM LYME, and read my long list of articles. Pain in autism, usually means to me, inflammation, in either the brain or other parts of the body, a true lyme symptom. Also get the book on the lia foundation page (of which I partially wrote). I don't get money for it, I just contributed. Suicidal thoughts, weird dreams, hallucinations, seeing things at night while sleeping, putting head on the floor and dragging it or banging head, big signs...
Posted by: Kathy Blanco | February 02, 2009 at 01:41 PM
Great piece!! Thank you for articulating so effectively what so many of us feel and have come to learn on our own autism journey. If it were not for the bond and relationships of other parents and grandparents, I'd not be able to endure some days. One of the greatest gifts our children give us is each other!
Your family joins the ranks of so many others whom we hold near and dear in our hearts!
Lin
Sam's Mom
Posted by: Lin | February 02, 2009 at 11:07 AM
The reason that I read this blogg is because so many of you are with it. Paige this is a well written article short to the point provocative to this cause. As a surgeon I am embarrassed by the lack of knowledge and compassion shown by the pediatricians and I also want my beautiful daughter Elika back. To that end we must first have a comprehensive medical plan for all children on the spectrum in the form of a treatment algorithm, currently it is all over the place with a million different ideas once we know are children are recovering at the expected rate to the normal end point we can go back and get these assholes. However this will take more than blogging people, law suits, voting, demonstrations (route) the whole nine yards. We have to demand accountability at all levels and severe jail time. Our tears alone will not be enough. So who has the Plan?
Posted by: Willie | February 02, 2009 at 10:41 AM
Bensmyson, how does one differentiate between Lyme autism and celiac autism?
My son's Asperger's symptoms practically disappeared with a combination of therapies (we did Tae Kwon Do instead of OT, Suzuki violin instead of auditory processing therapy, and drama classes instead of speech therapy) and a gluten-free diet. But just recently, he seems to have depression/thoughts of self harm that are directly linked with dairy consumption.
However, he does not have pain, ill health, or any other symptoms that would make me think of Lyme, though I am aware of its link with gluten intolerance and how underdiagnosed it is.
How does one figure out whether it's Lyme or celiac when the blood tests for both can be inconclusive?
P.S. Thank you ALL for your powerful thoughts!
Posted by: Taximom5 | February 02, 2009 at 09:45 AM
Excellent article Paige! I wanted to read MORE! And such outstanding comments in response to this article as well..
And keep up the strength bensmyson! ((hugs))
Posted by: CamJam | February 01, 2009 at 11:07 PM
"WHY? Why was his immune system in that condition? Was he ill? Was it food related, specifically GM food related (corn, soy, HFCS) from breast milk or baby food?"
2 months prior to his 12 month vaccines he suffered an extremely high fever of 107.* He was diagnosed with roseola. Two common strains of the herpes virus cause roseola. The condition typically causes several days of fever, followed by a rash. Like roseola, Chickenpox is caused by the varicella-zoster virus, a member of the herpes virus family.
*I should add that he presented no change in behavior after his fever as the videos of his first birthday prove. It was only after the vaccines when he changed.
His blood work the day of the 107 fever showed very few white blood cells. He was very sick. Two months later the same doctor that treated his roseola administered the vaccines, 3 different ones along with ProQuad, an MMRV vaccine that includes the virus chicken pox. ProQuad was taken off the market by Merck the same month Ben received his shot and has yet to be put back on the market. ProQuad's manufacturing plant was also shut down around the same time due to reasons of "contamination."
According to the blood work taken on the day of the vaccines his white blood cell count was below normal level, indicating a compromised immune system. He received the shots anyway.
Immediately after he developed more days of fever, seizures and lost his speech. Within 3 months he was a completely different child.
Currently he has been diagnosed with encephalitis. His toxic metals etc (uranium, mercury and something found in carpets and other rubbers or plastics) are extremely high, we are working on lowering those. His blood work now shows he has the immune system of someone with HIV/AIDS.
Soon after the ProQuad he developed more fevers and a rash, this time on his hands and feet and not just on his trunk. Our current doctor feels like he contracted measles and that the virus causes his brain to swell.
He is doing extremely well with all his treatments, is maybe 6 months or more delayed in speech and still has some social issues and various "quirks" that cause him to fall in the spectrum.
I am certain that the vaccines are the cause of his illness. He was not a well baby when he received them.
Now, if my son became autistic because of this, or symptomatic of a child with autism, and others are becoming autistic even though they are well when they receive the vaccines then surely a correlation can be made. There is something in the design of these vaccines that are attacking our children, there has to be if it presents in both children who are well and children who are sick the day of the injection.
All I know is for a year my child was on par with his development and after the vaccines he regressed and this seems to be fairly common with a good number of you.
I've spent the past two years working to get my son well. I'm ready to fight in the streets to see to it those responsible be held accountable.
I can't sit in a pediatricians office anymore because of the one year old children I see leaving crying, knowing why they are crying, knowing how ever slim the chance, it's just not worth it until some real questions get real answers.
Posted by: bensmyson | February 01, 2009 at 10:13 PM
Very beavutiful Paige-
I hope you write a book when you can "find the time"...like you, I have had to give up any is deas of friends, going out to lunch, shooting the wordly breeze, worrying about what I look like, or am perceived of. I had to drop all notions of "normal"...and everyday of my life, when confronted with the general public "evil all knowing eye", my kids have this sort of social bullhorn...what is wrong with your child? Hopefully, you don't point that same indignant finger at yourself, like I have. I sometimes go out to the car and just ball my eyes out that I can't be noremal, so called. It's gotten a little better, after 27 years....
I have a friend (acquiantance) who's child is at the end of a chemo series for osteosarcoma...suddenly she began to realize my life...in an odd sort of way, she began to connect with me, that someone is always "sick in the house". It was like that for a while, until her son got better, and now they have a MAKE A WISH dream cruize in the future. The talks are now back to wordly, and now about what I can do next to cure my child. I wondered? Why don't we have a make a wish dream cruise too? The kind where you can either bring your child without embarrassment or worry about safety, and or, the kind where you have great respite and escape for a week or two? I know my kids aren't dying per say (they can with seizures howbeit), but I know in my heart, that each one of us deserve a cruise? We deserve some kind of profound aha moment, where we finally get, what this life is about...
I hope you keep your army boots on, and I hope that all of us won't whimper away from the task of autism..like we have a choice?
Anyways, keep the faith.
Last question, pain, autism? They don't alk about that one?
But I think I can help you, if you want to email private. I think pain in autism is probably lyme autism. Most lyme patients with autism, are in pain. Inflammation, pressure, arthritis, gut problems...thoughts of suicide etc etc.
Posted by: Kathy Blanco | February 01, 2009 at 07:15 PM
Thank you for putting it so beautifully, Paige. There's solace in reading words that really nail the plight and you have. At what a price though! You're right.
This seems to be always the conundrum of survivors, that this sense of burning purpose and reprioritizing that simplifies life and stops us from sweating the small stuff-- the thing that might be the secret to happiness otherwise-- is at the price of real horror and suffering. You write the truth and because you do, maybe other children won't have to live through this for their parents to learn the gist.
Posted by: Gatogorra | February 01, 2009 at 03:26 PM
Wow! Very nicely written. I see my wife in your story.
Posted by: ObjectiveAutismDad | February 01, 2009 at 02:52 PM
Paige, thank you for your powerful essay. The way I see it, so that the next generation isn't faced with this, we all need to engage to the greatest extent
we are able until things are straightened out. No more autopilot dependence on 'experts.'
Bensmyson, the activism you describe? I am with you and I see millions of Americans mobilizing across arbitrary divisions (vaccinations, food, environment, autism, allergies, learning disorders, others) into a unified force to demand the establishment and enforcement of standards to protect the health of America's children. It can't happen soon enough.
And I think the details about what happened to your son (after a much warranted more thorough assessment by immunologists) might explain why.
'...Ben's immune system was extremely low the day of his vaccine and that "anyone with the ability to read should have known not to administer those shots when they did"...'
WHY? Why was his immune system in that condition? Was he ill? Was it food related, specifically GM food related (corn, soy, HFCS) from breast milk or baby food?
Please read this explosive essay,
http://allergykids.wordpress.com/2008/06/10/a-ripple-of-hope-when-courage-and-conscience-collide/
and this petition (question marks need to be replaced by quotation marks).
http://www.democracyinaction.org/dia/organizationsORG/oca/campaign.jsp?
campaign_KEY=22616
More links here,
http://www.ageofautism.com/2009/01/paula-crossfield-on-huffpo-a-friend-of-our-kids.html
Enough.
Posted by: anonymous | February 01, 2009 at 02:11 PM
Thank you, Paige, for sharing your eloquent view from farther up the experiential trail. Too often we parents aren't comfortable discussing the darker emotions. But when we shine a light on them and see what we're dealing with, we can learn techniques to re-route them.
Posted by: nhokkanen | February 01, 2009 at 12:54 PM
Paige:
That is one of the most powerful pieces I've read in a long time. This experience changes us and makes us almost part of a resistance movement. Hopefully we who are ignored today will be listened to tomorrow.
Kent.
Posted by: Kent Heckenlively | February 01, 2009 at 11:23 AM
Paige,
What a powerful and beautifully written tribute. You've really put your finger on the experience that has transformed so many of us. Thank you.
Posted by: Mark Blaxill | February 01, 2009 at 11:08 AM
Thank you, Paige, for sharing your heart - and probably most of ours as well. It is a different life in so many ways, but I truly thank God that He allows us to grow into more passionate, more purposeful people in the midst of all the pain. My hope also rests in Him that He will do the same for our children.
Posted by: Allison | February 01, 2009 at 10:54 AM
It's been almost 2 years now, and although with some remarkable improvements my son has yet to return to me 100%. When we are alone together, with no other child to compare him to, no eyes looking our way, no friend or relative saying "nothing is wrong with him, he will bloom when he wants to" I see the most talented, sweet, loving little boy in the world. Because of that I want, no, I need to spend as much time with him as I possibly can. This means near bankruptcy, alienation of friends and family and loneliness. Even though I am married, I still feel alone. It's like we both suffer on different levels. Sometimes when we cry, we are crying for different reasons, but always we cry for Ben.
At first I didn't want anyone to know anything about Ben, it was as if all this would soon go away and if no one knew what we were going through neither would we.
Lately as we approach Ben's second anniversary of his 12 month vaccines I am finding myself, more and more, angry. Furious that no one seems to get it, no one seems to care, no one, even though I have never asked, has come up to me and just given me a hug.
I have rejected all the families support groups because so many people have much worse situations and franky it scares me to think that one day my son will be older and his cute mannerisms of today will be obviously problematic later on. Reminders of how behind he actually is.
But lately I have found enormous support and kinship on the many boards I have found online. My anger is more focused and my sadness has transformed into an energy of survival, of even retaliation.
Who knows, maybe I will tell my next door neighbor the truth about Ben, maybe I will tell those I work with why I don't work or perform as I used to. Maybe I will see an attorney for help, educate an elected official about autism, maybe I will don a bandanna and take to the streets in a revolt against ignorance and for justice.
The way I see it, what is happening to all of our children is criminal, no different than a world filled with out of control, government licensed and irresponsible drunk drivers running up on the curb and crushing our sons and daughters with no one holding them accountable. In fact the very authorities supposed to protect us against such violent acts are the very ones handing the keys to these out of control drivers.
I remember the day of the 12 month vaccines, the doctor explaining to both of us how safe and necessary they were. We reluctantly signed the paperwork to allow our innocent child to be injected with viruses. Later that night he said the last sentence he would say for nearly 16 months.
It was about that time that we got the courage to take Ben to a DAN doctor and she looked at his records and told us that Ben's immune system was extremely low the day of his vaccine and that "anyone with the ability to read should have known not to administer those shots when they did." It was like the two-by-four to the head. The drunk driver jumping the curb. And no one saw it coming, no one saw it happen, and no one is taking responsibility. He might as well been abducted by aliens.
I say my son has a brain injury, people know what that is, an injury to the brain. No one says, "how do you know that" or "its just a phase, he will snap out of it" People understand brain injury.
What no one other than you good people posting here know why his brain is injured, you know because we share the same faces.
I got my bandanna, I got my war paint, I'm ready anytime you are to take to the streets, occupy buildings (as they did back with ACT-UP when people called AIDS the "Gay Plague") or throw pies in the faces of conspiratorial denouncers of truth. God help them if all of us picked up and started banging pots and pans every time they open their mouths to spread more lies about the victims of their deception.
God help them indeed.
http://www.actupny.org/divatv/newvideopics/GrandCentralProtest.jpg
Posted by: bensmyson | February 01, 2009 at 10:22 AM
You spoke my own heart so well, thank you!
Posted by: Julee Huy | February 01, 2009 at 10:11 AM
What a truthful article, Paige. My closest friends are those who are parents of special needs children, and to me they are the most remarkable, caring, strong, and kind-hearted people I have ever met in my life. Those friends are the closest to my heart. I am not an overly warm person, but when I run into another parent faced with the challenges of children with autism, Down syndrome, or Trisomy 9P, I embrace them with a hug. The pain I share with those parents is palpable and ever-present, but so is the bond.
Posted by: Gayle | February 01, 2009 at 09:55 AM
You have described it so well. Before my son, I was somewhat shy and people could and did walk all over me. Not any more. I have even heard myself described as intimidating. Autism changed me profoundly and I am glad for the change but not for the reason.
Posted by: sue cranmer (sparkil2) | February 01, 2009 at 08:31 AM
"Not everybody chooses (or is able) to fight this thing, but I think that those of us who do find our best selves in the process. This is the woefully inadequate gift of autism—a life with a purpose. The kicker is that it's bought and paid for by the suffering of our children."
Ugh! Right through the heart! I have been trying to express this exact feeling for years and have never seen it put so perfectly. Absolutely powerful. Thank you.
Posted by: Julie Obradovic | February 01, 2009 at 08:05 AM