LeRoy, PANDAS, Autism and EL - Will the real "Mystery Illness" Please Stand Up?- Part 1
I am the Lorax!

My Mood Ring: The Joy of Being Spared a Mediocre Life

Caution to WindBy LJ Goes

Recently my daughter Mads and I headed off to the neighborhood mani pedi place for a day Fancy Nancy would have considered the ultimate in posh (that’s a fancy word for ritzy!). 

The Daddy Daughter Dance sponsored by our local high school was on the calendar and Mads wanted to look divine. From my seat in the salon I observed her budding confidence.  The nail artist painstakingly created a perfect white flower on her bright neon orange nail.  “Thank you!  Wow, that is amazing!”  She preened, smiling the widest most brilliant smile, following her amazement with infectious giggles.  I wished with all my supernatural maternal power that the joyful feeling of beholding her in that moment could last forever.

Meanwhile, at home, our son, Noah, who was misdiagnosed with autism, worked on toileting with one of his caregivers.  He hates toileting.  It annoys him and since he is often hard pressed to find the language to express his distain, he often acts out with slaps and screams.  We’ve seen great gains with his most recent treatment protocol, but, as anticipated by his physician he’s recently hit a period of regression.  I savored my time with Mads like a prison inmate appreciates time in the yard. 

Hours later I was working her up-do like a pro, putting hair pins in all the right places and spraying strategically.  Her little brother Liam kept grabbing the hair accessories and clipping them to the new Harley Davidson sweatshirt his father had purchased for him today at the Motorcycle of All Motorcycles stores.  “I want a fast bike mom!  The big one!”  Greeaaat, I thought.  A little Dave.  Handsome, super smart, and DANGEROUS!  “No you don’t.”   I said.  He walked out of the room with his head held high chanting, “yes I dooo-oooo!”  I heard him relay the exchange to my husband who yelled up to me that I shouldn’t squelch our youngest son’s free spirit.  Niiice.

Around 5:30 my in-laws arrived for pictures and I hit the wall. Anxious, angry, sad and overwhelmed would accurately describe me between the hours of 3:00 and 6:00 on any given day.  My Mood Ring, Noah, demonstratively began to project how I felt to our guests and anyone within earshot of our house.  He acted out, whining, screaming and slapping.   My mom-in-law, sensing the tension, offered to take Liam for a special trip to her house so I could manage his behavior (and my own) without distraction.  Thank God for the village.

Moments later the door shut behind them all - just me and my Mood Ring for the remainder of the evening.  What to do first?  Five loads of laundry?  The dishes?  The disgusting…and I mean—DISGUSTING floors?  Tackle the filthy bathrooms?   I have an article due next week, papers to read and sign for our non-profit, phone calls to return, emails in need of attention that have been sitting in my inbox for weeks;  IEP reports to review and 2 new protocols to research.  Playdate requests.  RSVP’s for children’s parties to send out.  Doctors to track down.  Test results to interpret. That bloody blinking light on the home phone.  You have 9 new messages, 42 saved…

What to do, what to do…

Defeated, I headed for the pantry. Chocolate covered almonds?  Organic margarita?  Nah, too festive for my state of overwhelm.  Plus, my Mood Ring was not interested in my attempts to self-medicate.  He slammed the pantry door and grabbed me by the shirt.  “No! No! Go!”

“What do you want?” I asked, not even hiding my annoyance.  (Bad mommy)  Today Mads got the best of me , kid.  We just gotta get through the night, see?  “Use your words buddy, tell me what you want?”

“UPSTAIRS!”  Okay, well, he used his words.  Loud and clear.  That meant he wanted to go jump on the counters in our master bath and lick the mirrors.  Not tonight.  I’m beat.  My back hurts. No. Only, I can’t say no, because that triggers a meltdown.

“Bud, we are going to stay down here, where’s your iPad?” 

“No, no, no, no, no.”  He’s pulling me now and I am already half way up the steps.  Should have made that margarita when I had a chance.

We arrived upstairs and I was immediately distracted by the state of my closet.  Clothes, clean and dirty comingled on the floor.  Gross. I bent over to sort.

“No, no, no, no, no!

“Okay, Noah, what?” 

“SHIRT OFF.”  Oh, a bath.  It’s not quite time yet, but, fine. I helped him take his shirt off. 

“No, no, no, no, no!”

While adding the baking soda and lavender to the water he tugged at me like a mad man.  “Shirt!”

 “Your shirt is OFF Noah, it’s off, see?”  I propped him up to look at himself in the mirror above my sink.  SHIRT OFF, NOAH!”  Come on.  See, it’s off!  It’s off!  Please don’t let this be our night. I am tired.  Lots of people are allowed to be tired at night and get away with sitting on the couch and watching mind-numbing television for hours.  If I could sit for 3 minutes it would feel like a vacation.

“NO!” He screamed and a tear formed.  He pulled at my shirt and screamed, “OFF!”  My face, which I have disciplined not to react to these constant high pitch screams for fear of premature aging, grimaced and split like baked clay.  How can sound hurt your face?  If you have a vaccine injured child you know of what I speak.

I tried to escape. Do something productive. Where was the toilet bowl cleaner? I was fumbling for the cleaning supplies when it hit me.

He meant my shirt.  He wanted me to play in the bath with him. 

WITH.

HIM.

What I did next would make any self-respecting parent of neurotypical children, cringe. I took off my shirt and jeans and hopped in the tub in my bra and underwear. 

He squealed with delight and clapped. “Okay, what next?”  I said, clapping right along with him. He filled a toy watering can from the bath and proceeded to dump the entire contents on my head.  Literally beside himself laughing at his shadow in the shower door, tears rolling down his cheeks, guffawing—he grabbed the can and did it again. I filled the can and dumped it on my own head - more hysterical laughter.  What happened next was nothing short of a miracle.  My sensory defensive son of 5 years, who has not been to a restaurant or a mall or a hair salon or a church in nearly 2 years, allowed me to wash his hair.  He dumped the watering can on his own head, three times.  “You’re funny.”  He said. 

You’re funny.”

This is known as interactive play.  It is sheer bliss to a parent who has been working for years to discover their child - their child who has been buried alive under layer upon layer of viruses, yeast and bacterial infections.  Right here, in my bathroom, my son invited me to play, to share a moment of his life with me.  I am telling you right now I heard an audible voice say, “There is more to come.”

My entire world changed in that moment.  A moment I nearly missed because I was dead set on getting through an evening instead of embracing it.  

I cannot tell you how many people have approached me to express their sadness about my family’s situation.   I am grateful people care, because, through their caring I hope to educate them and I hope they in turn will take that education and share it with others. However, the pity is not necessary.   I have to watch my predisposition to the self-version like a diabetes patient monitors their insulin level.  I am prone to serious bouts of melancholy and depression when I stop living in the moment and only see a life filled with combative hits, high pitch screams and strung out siblings. Yes, that is life...sometimes...but not always, I remind myself.  Repeatedly.

Before autism, my husband Dave and I were headed for a life of mediocrity - a life of selfish pursuits, self-aggrandizement, and things.  We had no idea what was happening in our country politically unless it affected our tax bracket.  We lived by live and let live, and assumed everyone else did the same.   We had no idea.  No idea.  Autism forced us to grow up, to abandon the ever popular notion of personal fulfillment as a lifestyle. Our lives now center around healing, educating, and enlightening our community about the reality of autism and chronic illness that is robbing over 50% of American families of their healthy children.   We don’t spend much time talking about what we’ve lost, but, we don’t ignore it either. It’s there, the money, the family time, the unfinished house, the untaken vacations, the sleepless nights.  We feel the loss.  But, what we do with that loss, how we have transformed it into something meaningful and worthwhile--social, political, and familial pursuits that create a better future for our son and his legions of friends—this is what LIFE IS ABOUT!  We are living the pointWe are living the meaning of our lives.  It is truly extraordinary to know you are doing exactly what you are supposed to be doing.  Even when people think you are crazy, your goals seem insurmountable and you are told repeatedly your child is so severe he cannot recover.  We don’t need to buy books or pay counselors to tell about what a purpose driven life looks like.  We live it. A friend from our past came to visit us last summer. Shocked and disturbed by what he witnessed he said, “I just don’t understand.  You are good people.  This shouldn’t have happened.  You shouldn’t have to live like this.” 

Here was my answer to that expression of regret:

If autism was gone from our lives tomorrow, we could never go back to the way things were.  We could never turn our backs on all we have learned.  We have an obligation to our children to stop what is happening in our country.  Our government is corrupt.  Not every facet, not every player, but many.  Our children are quite literally being poisoned by preventative medicine, their food, their toys and their environment.  These man-made triggers are pulled in the loaded guns of genetically vulnerable children,  everyday.  Some die.  Some suffer auto-immune and mitochondrial damage that will be recognized for generations to come.  We simply cannot allow it to continue.   Please read this to understand what I am saying.  Join us.  Educate your community.  Become a REVOLUTIONARY.  You will be so very grateful you did. 

LJ Goes is an essayist, executive board member of the Canary Party, and co-founder of The Thinking Mom's Revolution.  She is mom to three children, one who suffers greatly from iatrogenic autism. 

Comments

Living the dream

LJ - So well said. Thanks for putting it into words.

I can't lie, I sometimes dream of that sweet mediocrity! What it would have been like to sail obliviously through the years with my wife indulging in all the things we wanted to do. But then I wouldn't have known who I really am and the depth of my strength and resolve. I wouldn't have known how truly deeply I could love all my children and how the woman I married and I could be so connected - that we could endure, give up so much and still love one another. I'm not the person I was before autism - mostly better for it with a few battle scars.

Recovery is a journey - I think back to the beginning and how overwhelming it all seemed...supplements, therapy, meds, diets that didn't work and diets that do...compouding pharmacies and doctors in far away places, books, IEPs, . In a few short years, these things now seem routine...almost "normal" (I don't use that word very often!) We have somehow managed to rise above them for the most part so that they are just a part of the fabric of our lives. So far to go still and always trying to raise the bar - but now she laughs, knows our names, looks at us and is happy alot.

Those things we would have enjoyed in an alternate life - a clean house, vacations, new cars, time to ponder, seeing a movie on cable without falling asleep - these all seem a little silly and trivial now. Whatever I may question about what I'm supposed to do with my life, one thing is I know for sure. I WILL do everything I can to give my daughter with autism a fighting chance in this world and love all my children with the same conviction.

LJ - hoping you and your husband can have a moment to yourselves here and there once in a while. You deserve it!

Nicole Beurkens

What a wonderful essay, LJ! Speaks to what I am sure so many parents are thinking and feeling. I love that you were able to set aside the "have to do's" in order to spend some quality time with your son - and that it opened up a whole new aspect of your relationship. That is powerful parenting at its finest. Congrats on escaping a life of mediocrity!
-Nicole

Jackie

Thank you for helping all your readers turn a corner with your reflections. You made me cry for joy - both for the miracle your son gave you - an entry point to build on - but also joy for your thoughtful reflection on our moment-to-moment belief system, that will help us all be better parents today, and maybe even tomorrow:)

Susie

Love it, as always LJ! My husband and I were headed down the same road you spoke of before autism. As difficult as life can be now, I wouldn't trade the person I am today from the old, self centered person I used to be. My beautiful boy has taught me more about life than anyone else has and anyone likely ever will. What an undescribeable joy to be able to bask in the moment of progress with your child!

DAN fan

Wonderful essay - you are a natural storyteller. I have a small suggestion which I realize is not in the spirit of this piece which is all about embracing the moment. But every time I ran a bath for my son, I added a generous quantity of dead sea salts as per DAN doc's advice. I just googled it, and low and behold, it seems folks over on Wrong Planet are benefiting from this treatment too.

They are correct about the magnesium and other minerals which are absorbed into the skin.

http://www.wrongplanet.net/postt177363.html

(The watering can could be filled from the tap for washing hair, salt-free.)

asusan

By "You're funny!" I was in tears. I could not read the next paragraph. Thank you for sharing such beauty with us.

Garbo

Wow! "Hey mom, I can see you are totally stressed out right now. You know what? Baths are awesome and when I am stressed out they sure make me feel better. Instead of eating that chocolate, how about you come play with me in the tub?" Who knew the words "SHIRT OFF" could mean so much? Your fun-loving, empathetic little boy is so very lucky to have you as a mom!

cmo

Autism is a bit like "waking up after a bad dream" but the dream starts at daybreak, and runs most of the day except for a few bright spots from time to time.

Part of the dream can only be to "save others" from the same fate, which might someday provide a little more support for our children down the line.

As always, the other side has no answers or real interest in the problem, they have nothing but a group of "worthless epidemiology studies" and indicted epidemiologists...

and elite vaccine dimwits who have had their vaccines pulled off the market for harming children.

hang on


These last two posts have been dynamite. My eyes have been opened to incredible injustices home and abroad, most manmade, and I have been particularly aware of what evils come about when for-profit interests corrupt governments. Our lives will never be the same, post autism, which has had its upsides. For us, that is. But not for our son.

Twyla

"No an MD", do take those three minutes! And sometimes even 45 minutes! It's your life too. Balance is important. Spend lots of time interacting with your kids and doing all the other things you need to do, but everyone needs space sometimes too.

LJ Goes, what a wonderful article! Thank you for your vivid, heartfelt, intelligent, articulate, reality-based, expressive writing. All the very best to you and your son!

Shiny Happy Person

The timing of this piece for me, personally, is perfect. Do those of you who contribute to this site stop to ponder that there are times when you (LJ Goes, Adriana Gamondes, and the others here), with your eloquent and articulate essays, literally save the sanity of certain readers...?

You guys knock my socks off, and at the same time you help me remember that being barefoot is kinda cool.

Tara McMillan

Its times like these and moments like these that make fighting for our kids, so much sweeter, less anal.

Not an MD

What a beautiful account of an important moment shared with your son. Thank you for reminding me that I must insinuate myself into my children's play time to work on strengthening those important bonds.

Sometimes I try to escape it all, by cooking a more elaborate meal than is required for my family, forcing some "productive" down time upon myself, as it is such hard work to keep the intensity up with my children at all times without diversion. It is an escape for me. Those are lost moments with my children when they are home from school.

As we know, our children are indeed "in there" even if we have to work very hard to find them, and then work even harder to extricate them. I see such brilliant glimmers of what my children are capable of achieving at times. It is an enormous task to try to free them, but I have to stop turning away from them at the moments when they need me to engage them in play. Why does play time occur when I am at my most exhausted?

Recovery is a relentless goal. There are no vacations (although I sure do need one), and just three minutes sitting on a comfy couch breathing deeply would be the equivalent of practicing yoga to me. How fab would that be-- to just sit down and breathe for a while? Without fail, my phone rings before three minutes pass, or I think, guiltily, that I could be writing to a legislator and making more productive use of my time. How sick I am of feeling guilty.

LJ, Noah is precious. Having you as his mother makes him very likely to succeed beyond any expectations. When my children come home from school, I am going to make sure I engage them in play. Thanks for the reminder to embrace the evening rather than just get through it.

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