Lisa Joyce Goes can describe like no other what it is to live the life of a mother whose child has autism. She speaks with humor and wisdom that goes well beyond her years. As hard as her life is, she explains how it can be even harder for others.

by Lisa Joyce Goes

Mancation:  A celebration of testosterone, filth, sports and libations.  Once a year my husband and several other accomplished men willingly relinquish their intellectual faculties and personal hygiene for four days and gather at random football stadiums around the country in celebration of their third eye, The Sports Oracle, and their inner child—who is, at best, an early 13.  It’s a small sacrifice and it makes my husband very happy, so it is one I willingly make.  Not in the passive-aggressive way we wives have, “Yeah. Whatever. Go ahead, it’s fine.”  In a genuine way. “Go, have the most fun you can possibly have without ending up in jail, getting in a fight, or costing us any more money than already budgeted. Come back ready to wipe rears and fold laundry.” 

Now my husband travels frequently, so this is usually not a huge shock to the system.  However weekends are always a challenge even with both of us home.  I should mention, we have three small children: Mads, seven; Liam, four; and Noah, our special-needs kiddo who is six, and has severe mitochondrial disease, intestinal dysbiosis and iatrogenic brain and central nervous system damage. I guess I could have titled this, “What the Moms of Special-Needs Kids Do While Their Men Are Away,” but with over 50% of kids diagnosed with chronic illness or obesity in America we hardly feel special any longer.

So here’s the play by play …

Thursday a.m.  Husband does morning duty.  I do all the cooking; he does all the squeezing, loving, book bag packing, diaper changing and dressing for our son with iatrogenic autism (brain and central nervous system damage and autoimmune compromise). Everyone heads off to school, and I get a big appreciative hug and a sloppy kiss from the positively giddy hub.  Niiiiice.  I’m a good wife (pats self on the back and notes that shaving legs would be a good idea this weekend).

Thursday noon.  Husband on flight to random stadium—somewhere in the south is the best I can come up with when asked.

Thursday pm.  Children home.  Our behaviorist, Kelly, arrives to help with our son Noah at 6:00.  Dinner finishes, bath starts, two neurotypical children who are a bit whiny and quarrelsome fed, but other than that just another night at casa de Goes.  Applaud myself on the clean kitchen.  Prepared, indeed.

Friday.  Much like Thursday, except our Noah is very distracted.  Stimmy.  Quick to scream.  Kelly gives him a ride home from school and he clocks her in the dome with his shoes.  He screams the entire ride, which is 20 minutes on a good, low traffic day.  He is very agitated.  Emotionally extreme.  Very little impulse control.  Kelly and I fret.   Mads and Liam retreat into my bedroom and shut the door, saying, “Mom his screaming is making us CRAZY!”  Kelly and I try to get Noah to assign his feelings and needs to the words he is learning.  He is stimming hard on fans something we have not seen in months. Now, Kelly is truly amazing.  Her career in bringing children out of the haze of autism has just begun, and I have no doubt many children will shed their labels under her compassionate tutelage. She loves my son and she is changing his life.  But she has to leave. I am on my own.  I got this.  I put the kids to bed with a prayer that all goes smoothly. Noah is still not himself, but I am hopeful. I check in with the Thinking Moms, enjoy some side-splitting banter, grab a glass of wine and retire with a historical novel about the Arapahos.  I love wine and I love American-Indian history (the real kind, not the winner’s version). I’ve had this book for four years and so far I have averaged a page a year.   Still, ever the Thinking Mom … I am hopeful.

Noah finally settled down.  A side effect of his iatrogenic brain damage, central nervous system damage and autoimmune compromise is a horrible skin condition that many doctors have had a very hard time diagnosing accurately.  While certain steroids bring it under control, the brevity of relief is almost not worth the side effects of the steroid.  This night the condition worsened.  I waited until he fell asleep to apply some salve to relieve it, something I normally do. When he’s out I cut his hair, his nails, wash his feet, put on his medicines, wipe the biofilm off his rear end and every other thing that he does not tolerate during his waking hours.  But, tonight, within two minutes of applying the salve he woke screaming and ran into my room.  He was delirious jumping on the bed, the moisture from the cream in his hands shouting, “Why!  Why? Mama! It hurts, WHY!?!?!”  He hugged me hard, and I paced carrying his 60-lb kicking frame, trying to figure out what I’d done differently or wrong.  “Let me see buddy!  Please, let me see.”  The gaping sores were slimy wounds, heat emanating off of them.  Noah tends to develop sensitivity to any medicine or food he imbibes regularly.  It is a comorbid condition of his iatrogenic autism (brain, central nervous system and immune system compromise).  We are currently trying to determine if he is allergic to his own histamine. Something his own body produces.  Our life is an ongoing quest to provide this boy with relief, so the fierce intellect we see burning beneath his sickness can emerge. An hour later I was able to calm him until he awoke coughing to the point of dry-heaving at 3:00 am.  He went back to sleep until 7:00.

Saturday.  Ready!  “Okay kids … we are getting dressed, going to Starbucks, picking up Ms. Shannon, our lovely behaviorist of the day, and heading to Whole Foods! (Shannon runs our home program.)  Then, we are going to come home, put away the groceries, do the laundry, clean out the pantry and take Mads to her friend’s birthday party.”  Kids dressed in no time.  Breakfast downed.  Mads is suddenly crying and asked to talk to me in my closet—where all meaningful girl talk happens.

“Mom … does Ms. Shannon have to come to the party?”

“No, silly, she is just helping us on our outing with Noah, why?”

“Because I don’t want people to know we need to have people with us to go out.”

“What do you mean?”  I asked.  She knotted her skirt and looked away.

“Because … I’m nervous people will make fun of him.”

Is this Fight Club? The sudden impact of her words left me feeling like I’d been sucker punched. I wanted to slap her and hug her at the same time.  “I know I shouldn’t feel this way!”  Now she was angry at herself.  She’s seven.  Her brother hits her sometimes, screams at her, and pees on her pink princess bed.

“Are you really nervous for Noah or more afraid of what people think? “

She reflected and replied, “You know  **** at school?”

“Yes.”  I responded.

“I know she would say something. She can be mean.  She can be so mean.”  She went on to give me examples of the meanness.  It was more show-off stuff and bad manners than mean.

“You know she has tight underwear and that’s why she’s so crabby—nana told you, remember?”

She laughed and softened, so I could deliver the blow.  “Mads, Noah is your brother.  I know you love him with all you are.  Just like Daddy and I love each of you the same and with our whole hearts.  Whatever anyone ever says about the way Noah is, or who we have helping him… that’s their problem.  I know it can hurt.  I know it’s wrong.  But, it’s their problem.  Maybe **** doesn’t know how to make right choices yet.  But, you should pray for her, okay?”

She was still concerned but nodded skyward and rolled her eyes as she dried them.  Nowhere near resolved, but we had to go. “Mooooooom!” Liam yelled.  I emerged to find him hovering over Noah who’d just dumped over all four loads of clean laundry I’d just folded. He sat on a pile of towels throwing underwear and mated socks into the air.

FOCUS.

Two minutes later everyone was brushed, coiffed and buckled.  While they may not love Whole Foods, they do love Ms. Shannon, so they were ready.  I picked her up and we were our way.  Some moaning and itching from Noah, but mostly a peaceful ride.  I told Ms. Shannon all about what Mads had said and she said **** should come to our house for a playdate so she could see how amazing Noah really is.  This is why we love Ms. Shannon.  Arrived at Whole Foods at approximately 10:00 a.m. ready to shop.  The tension of the morning’s conversation had all but dissolved.  Noah was a champ.  Mads and Liam were … dare I say, delightful?  At one point, Noah goosed a lovely African-American woman.  She turned around and said, “Bet you got a handful son!”  He enthusiastically smiled and said, “Hi, you!”  Shannon notated it on her clipboard and informed this patient woman that he does not bestow his affection so easily, so she must be special.  This beautiful woman reminded me a sense of humor not only makes life livable, it makes it Holy.

We passed the meat counter with nary an incident.  Even forgot reusable bags in the car and had to go back for them.  No issues.  Forgot something in dairy.  Had to go back. No issues.  Checked out to the tune of $359.86.  No issues (except the obscene cost of non-poisonous food).  Ride home, bliss.  Parting ways with Ms. Shannon proved a challenge, but nothing a little iPhone time couldn’t fix. Fed them lunch, unloaded groceries, took Mads to the party. Everything was moving right along.

I set the boys up with some fruit and It’s the Great Pumpkin, Charlie Brown! while I tackled our discombobulated pantry. Stacking water bottles and archiving spices, I started to feel tightness in my chest. But, the doorbell rang, so I didn’t grab my inhaler just then.  I answered the door.  My friend breezed in and picked up the bag of groceries I’d gotten for her.  Locking the door behind her I wondered where my inhaler was.  The phone rang.  Answered it.  Now for that inhaler …

“Moooooom!”  Liam screamed from the top of the stairs while I was digging through my purse.  “Noah is eating all the toothpaste!” I ran up the stairs and wrestled the two tubes from his hands. He laughed and ran into his room, smelling of poop.  It was then that I noticed he’d gotten a bag of rice chips (verboten) and he’d also sneaked a few water bottles from the pantry.  Several bottles were overturned and emptied near his bed and on the catwalk.  I was so preoccupied with the messes, I quite literally forgot to breathe.  But, now, I had no choice.  The tightness was only allowing me to take big strangled gulps of air in without really exhaling. The wheeze had all but taken over.

I hobbled down the stairs to my purse, finally finding the inhaler. Two drags and nothing.  I crawled up the steps and to my bathroom to find my prednisone.  Popped two and left them on the counter while I rooted around in the linen closet for my nebulizer. I brought it down to the kitchen so I could be near the boys as I gave myself a treatment.  One treatment.  Still not better. Two treatments?  Worse.

I convinced myself in just a few moments that everything will kick in.  I tracked Noah down and changed his diaper.  He had stripped off all his clothes.  Liam was watching Charlie Brown and flipping all the couch cushions over.  “Buddy, put those back.”  I whispered. He looked at me mischievously.  Liam is our intuitive child. “Come and get me!”  He smiled so nervously, it broke my heart.  He was willing me to be okay. “Buddy, listen to mama, okay?”  “I’ll put the cushions back.”  He said through his eyebrows.

I sat on the steps and assessed the situation:  husband gone, brother-in-law gone, my mom-in-law at a retreat,  my father-in-law speaking at a church function.  My friend who just left?  On her way to Indiana.  My other friends live clear across town. Neighbors at a hockey game.  I had to pick up Mads in an hour.  Why was my medicine not working!?  I have had asthma since I was one.  I know how to manage it.  I know how to calm myself.  But, Noah, sensing the shift in power and energy, became a whirling dervish. Lunch plates tossed in the air, the remains of their meals, shredded.  Eating rice chips.  Stripping beds.  Running throughout the home flicking all the ceiling fans on and off.  Spitting out food.  Tearing apart paper and styrofoam.  Spilling and walking through Epsom salt. His frantic destruction and my inability to do anything about it began to set Liam off.  “Mom!  He’s on your dresser!  Mom, he flipped over my toy chest!  Mom he’s in the bathroom!”  Now, this one scared me and to death. Prednisone on the counter.  I lurched forward to retrieve him but for the first time in my career as a mom, I simply could not mother.  I could not move, having to use every resource to concentrate on preserving my breath.   But there didn’t seem to be any left. I was starting to see those weird spots in my vision as my neck muscles tightened. Liam was pacing around me, pretending to play, watching me like a hawk. I pretended to breathe, smiled for his benefit, while I prayed to hear Noah’s footsteps or verbal stims, and reached for the phone.

Sidenote:  When you have a child with iatrogenic autism there is not one moment they can be left unattended.  Not. one. moment.  There is no, “Oh, he’s playing in his room,” or “They’re fine, they’re just playing a game or watching a movie, or in the yard, or in the basement.”  Every minute that child is in your presence you must be active, trailing, guiding, walking alongside, running after, blocking or monitoring him or her.  Please understand this when you go in for your next well-baby visit.  It is very much like the vigilance you had over your newborn.  Constant attachment. Constant care. Only babies who fall victim to iatrogenic autism grow, learn to walk and sometimes talk, but still have ZERO regard for their own safety. 

Within moments of dialing 911 paramedics arrived.  Finally an albuterol treatment that was working. “Please find my son.” I said finally.  They were calm as they ordered me to take deep breaths.  Neither one of them moved, though.  “Oh is he in the house?  Does he have a favorite hiding place?”

“I think he is in my bathroom upstairs and that’s where my prednisone is.  I left it on the counter.”

“I’m sure he’s fine.  Just try to hold the medicine in and take deep breaths.”  I have had so many of my legitimate health concerns for this child dismissed by doctors with the phrase, “I’m sure he’s fine,” that I felt a burning physical reaction to the words. My heart pounded furiously from the albuterol and the ignorance.

“He has autism. He’s in a diaper.  He has no clothes on.  He’s six.”  A tear ran down my face, as I spoke to their backs.

I heard them talking to each other, “Not in the bedrooms.  Not in the basement.  Not in the garage.” Now the paramedics were starting to wonder.  Maybe mom’s not overreacting after all.

I heard them singsong his name.  “No—ahh! Where are you buddy?” God, is all the world ignorant to this affliction that is devouring the brains of so many of our sick, sick children?  “He has AUTISM!  He will not respond to his name.”

Full deep breathing was restored and accompanied by a maternal adrenaline surge.  All the machines I was hooked up to trailed behind me as I grabbed the tank supplying air and padded through the house to find my son.

Instinct told me the garage, and that’s where I found him—in the trunk of my car, with poop cascading down his bare legs.   The rice chips.  Immediate fall out.  Gluten free.  Dairy free.  Not soy, or “natural flavors” free. Treats for the other kids. Treats he knew how to find, because he knew I was weak. My guard was down. I looked away. Constant vigilance.  Constant. Like a soldier in a bunker.  Without it, you lose every time. I picked him up along with the albuterol mask and carried him into the bathroom.  I knelt on the floor to change his diaper, still dragging  puffs of medicine while the two paramedics stood by watching.  Copious amounts of yellow bile flowing out of this child, his legs bloodied and pussed from toxicity.  No questions, just confounding comments.  “Wow, how’d we miss him?”

The same way 98% of our medical community misses vaccine injury, you jackasses. You’re not REALLY looking!

The mainstream still calls the state of Noah’s bowels “toddler diarrhea.” Since they don’t count kids under 12 in the current autism statistic of 1 in 88, maybe that means they can be toddlers until they are 12 by the Center for Disease Control’s standards?  So it will clear up in another six years. I can’t wait.

One of the EMTs looked at my prescription for albuterol and noted it wasn’t albuterol at all, it was ipratropium bromide.  He questioned why a doctor would prescribe that for me, given my medical history of severe asthma. I wish I knew.  I wish I paid more attention to myself to be perfectly honest. I thought the commitment to shave my legs was a big self-indulgent treat.  I spend so much time checking rechecking, testing retesting and monitoring Noah’s doctors, since doctors made him sick in the first place.  Do I really have to do it for my doctors too?  Maddening.

I signed that I didn’t need to go to the hospital.  Rounded up my boys and headed to pick up Mads at the party.  I was literally high from the miasma of albuterol, black coffee, and prednisone.  I talked a mile a minute, apologizing right and left for my tardiness, and shuffled my pink prima donna into the car.  She prattled on about the party: how cool her friend’s room is because she has bunk beds and they have a homework chart on their fridge—why don’t we do that?  Why don’t we do any number of the hundreds of things “normal” families do?  “I don’t know babe, I don’t know …”

We settled in for movie night and cleaned up.  The side effects of the medicine had me wide awake until 4:00 a.m.

Sunday a.m. “Good morning, kiddos!  Time to get dressed and eat breakfast!  Today we are going to the Immediate Care Clinic so mom can get the right medicine for her nebulizer!”  Not the easiest sell, but—what choice did they have?

Once Noah saw the building he panicked.  While he walked in without fleeing (huge progress!), he screamed repeatedly, “NO!  No blood today! No, mama!”  A nurse took pity on me and offered to let the kids sit in the lobby while I was seen by the doctor.  He screamed the entire 15 minutes we were there. After checking my pulse, the nurse said asthma and allergies are terrible now, her daughter suffers  greatly and nothing seems to help her.  The doctor told me the same thing about her brother.  Of course, I know why this happening.  If you are reading this and you are a thinking parent, you know why, too.  But, don’t ya sometimes get sick of educating the people you pay to heal you? I decided I’d been through too much this weekend to bother with them. They’ll come around.  Or not.

I walked out with the prescription I told them to give me. It’s been my experience, with the medical profession, paying customers get exactly what prescription they want.  Whether it’s what they need or not.

My mother-in-law stopped in for a glass of wine and my husband followed shortly after.  I told them the sordid story of our adventures, and we did what our family does.  We laughed.  I was so grateful to see the whites of adult eyes nothing could have ruined my mood.

Epilogue …

Since I have been writing in this manner, telling my family’s very real truths, I receive many kind messages of loving support.  I appreciate that, but what I appreciate more is people going out into the world and telling my story.  Because, it is not just my story—it is the story of many American families.  Trust me.  I am in your neighborhood if you would just open your eyes. Some of these families do not have husbands coming home.  For some, it is the wives who give up and walk out.  The rigors of iatrogenic autism can crush the most substantial souls. Often these families do not have in-laws and friends checking in on them.  They do not have $359.86 to spend on clean food.  They don’t have a house to search because they live with autoimmune compromised and ailing children in a one-bedroom apartment.  They, more often than not, are without the means to pay for a Kelly or a Shannon.

My weekend crisis is their daily life. 

Some of them, because they receive government aid, are forced to vaccinate their sick children, when they know very well the harm—and in some cases DEATH—it may cause.  Instead of writing me, please go out into your communities and find these families.  Serve them.  LISTEN to them.  Represent them.  DEFEND THEM.

Recently an acquaintance said to me, “I have a friend who should talk to you.  Since her son got diagnosed with autism she cancels plans and forgets playdates.  It’s like her head is in the clouds.”

Quite the contrary.  She is wide awake. She is learning the medical system that we so willingly surrender our children to is actually harming an incredibly large subset of them.  She is drowning in an ocean of medical terms, learning  about biofilm, nagalese, cytokines, mito cocktails, intestinal bugs, IVIG, antibodies, mast cells, and vaccine clears. She is reading Evidence of Harm, the Eli Lilly Rider and the Simpsonwood transcripts.  She’s learning the truth about our country—that the most heavily vaccinated populations have the most dead and neurologically ill children to explain away. Every time her kid drinks a glass of milk he gets spacey and has weird bowel movements.  But, how is that possible—it’s just milk? In her world, nothing is just anything anymore. She is trying to keep her head above water and save her child. She doesn’t sleep.  She doesn’t plan anything besides his healing.  She does not mean to offend you.  She doesn’t even think about you.  Do not judge her.  Offer to help and support her.  Please.

Lisa Joyce Goes graciously granted permission to republish this important article on autism. The original can be seen here.