Managing Editor's Note: Thank you to our friends at The Thinking Moms Revolution for sharing this post with us. Add their site to your favorites.
By L.J. Goes
This week my children were on spring break. As any autism parent will tell you, this is an incredibly stressful time for the entire family. Routines are disrupted, children grow restless. Time that should be considered a gift with family becomes a challenge of particularly terrifying proportions. Especially when you have a child who is big on spinning glasses, climbing on countertops, disrobing and fleeing his home. Hours that were previously structured down to the minute now present an endless sea of potentially dangerous moments for the child with autism, as well as his family.
Sound absurd? Think I'm exaggerating? I don't make the rules, friend. I just play by them.
On this particular spring break day my husband Dave and I were determined to get some things done around the house. We had stacks of dirty dishes to clean, laundry to fold and an organic garden to plant. Plus, we had to make our weekly pilgrimage to Whole Foods on the west side to drop our regular 390.00 a week on groceries. Yes, I said 390.00 a week. Ergo, the pressing need for the garden. We decided to divide and conquer. Dave hoped our son with autism, Noah, would be enthused by the idea of planting. While he struggled to get him into his overalls I loaded our neurotypical kids, Mads and Liam, into the car and headed out with the promise of a visit to the park afterward.
As we pulled alongside their favorite tree lined park Liam bounced a brand new shiny yellow soccer ball on his lap. Instantly, he noticed a child playing and said, "I am going to make friends with that boy!" They hurried out of the car and I lagged behind fiddling with my phone, checking emails and voice messages. I looked up to find Liam chasing the little boy. While mainstream medicine will have you believe autism moms are most often of the Bettleheim or helicopter variety, my husband and friends will confirm for you that I am rather laid back. Children’s affairs are their own in my company, unless someone is getting hurt.
"Wanna play soccer?" He said, as he threw the ball at the little boy's feet. They faced each other now, barely a yard separating them. The adorable little black haired boy had no reaction to the heavy plastic that landed squarely between his feet. Instead he stared through prism glasses at something. The sky? I couldn’t really tell.
"Hi! I’m Liam!" My little man said as he knelt to retrieve the ball.
"Ahmed! Say hi! Say hi!" A beautiful woman with a nervous smile rounded the corner. Ahmed paid no attention to her or Liam. Instead, he walked over to a tree in silence and plopped down facing the trunk. Then he got up and circled it.
"He's shy." She said.
I get very little time to not think/act/do/medicate/advocate/research autism so I just smiled that, “whatever” smile that’s meant to indicate I am nice, my kids are decent, but I am not in the mood to talk. I’d been up since 3:30 a.m. with Noah while he ran up and down our catwalk screaming and flicking lights on and off. It's barely afternoon and it feels like 7:00 p.m. I didn’t really care if Ahmed was a wall flower or Mr. Social. I just wanted my kid to have another “normal” kid to play with for awhile. Liam was late to potty train, thought hitting was a suitable invitation to play, and can tell by the tone and pitch of Noah's screams whether he wants to watch Mickey Mouse Clubhouse or Little Einsteins. His first collection of words included the phrases "Noah sick and Noah hit!" On this particular day I wanted him to have the opportunity to play. To be free. Just for a few minutes. He does not have autism, but it envelopes every single day of his life, too.
Mads took off, creating an imaginary world full of mystery, intrigue and accomplishment. She ran past me claiming she'd just rescued a fellow princess, discovered a secret lair and come up with lyrics for a new song. Why don't I always carry around paper and a pen for her for when these moments of inspiration strike? Isn't that something a mom should do? Probably. I'm busy.
I had hoped to use this time to compose an email to the local press about the CDC's gross miscalculation of 1 in 88. Shouldn’t the consumer public know that they didn’t bother counting any children under 12 years old?
I was too distracted by Liam’s struggle to make contact with Ahmed to focus, though. Ahmed’s sister and Mads had discovered the joy of the seesaw and were alternately flying in the air, squealing as the wind caught their hair. Liam stood with his ball, looking like the kid that didn’t get picked for the team.
Suddenly Mads lost interest and headed over to the swings. Liam quickly mounted the seat she vacated, “I’ll play with you!” He bubbled enthusiastically to Ahmed’s sister. In what seemed like a fraction of a second the mom appeared with Ahmed on her hip yelling at her daughter in another language. The little girl was shocked but obeyed and hurried off the seat. She plopped Ahmed down in her place. With exaggerated motions and dramatic gestures she tried to motivate Ahmed to engage.
Ahmed sat. Liam crouched down and pushed. “Hi!” he said, again. The seesaw remained still.
Ahmed did not respond.
More gestures on mom’s part. Smiles. A little yelling.
Ahmed sat limp, staring at the ground.
Oh Lord. Please no. She doesn't know. She doesn't know.
For those of us who saw what happened to our kids, who now see the big picture, this is a horrible thing. It happens a lot and it never gets any easier. This mom was me not long ago. Desperate. Looking for answers. Repeatedly told everything is fine. It's okay. Nothing to worry about mom. You know those numbers are inflated. Anybody can get an autism diagnosis these days. He’ll catch up. His sister probably does all the talking for him. You absolutely did not see what you thought you saw. Don't believe those crazy parents. The science is conclusive...
My heart began to race. I took deep breaths to calm myself and listened to the voice in my head. "Observe."
I have held down a screaming child, blocked his arms, and stretched out his legs to make sure he received every last one of his shots at his 12 month well baby visit. No child of mine would go unvaccinated. Shortly after I would hold him down as he fought the application of several electrodes to his head. We had to determine what types of seizures he was having and why. In a battle that ensued for over 45 minutes he blew out his diaper and broke blood vessels in both his eyes. He finally passed out from exhaustion only to awaken 15 minutes later punching the air with such force he propelled himself out of his hospital bed (inadvertently pulling off many of the electrodes and ripping out his own hair).
As difficult as those events were, in this moment, the psychic pain of watching this desperate mom try to reach her son seemed worse.
She circled him, willing him to move appropriately, with a big fake smile plastered across her face.
"Come on Ahmed! Look! A friend! A friend, Ahmed! See. Can you push? Can you push? Push. Ahmed…Ahmed? Ahmed!”
Then whispering, gently nudging his legs, “Ahhmed. Come on Ahhhhmed. Come on. The little boy wants to play with you. See? See!”
Ahmed has no idea what a friend is. Is a friend the seesaw or that unpredictable moving mass on the other side of it?
She switched back to yelling.
Calm. Pleading. Hysterical. Screaming. It doesn't matter.
Autism does not respond.
Liam was getting scared so he swung his leg over to get off. She lurched toward him. "NO! You stay!"
She looked back at me apologetically. "I need him to play with other boys. He plays with his sister all the time.” I knew she was lying. Ahmed does not play with his sister. Ahmed does not play with anyone.
Liam tugged at my jacket, "Mom, I gotta go pee pee."
She looked into my mother’s soul at that moment. Mom to mom. My heart ached for her. The searching. The tireless searching. The private knowing, the constant reassurance from those who mean well and those who simply do not want to engage. The rheumy cheeks. The dark circles under his eyes. That chunk of time when they are still considered babies and failure to develop is still misconstrued as passivity. Months and months pass you by and denial takes hold. Suddenly, they are not merely delayed babies anymore. They are “special” children. Wait and see, Ahmed's mommy. Wait and see. I’m sure she did. We all did. Suddenly, I felt exhausted and sick and I didn’t want to be the one to tell her.
Would it be so wrong to let her keep believing what the doctors have been saying? I mean, it's not like she's not going to find out. If the doctors won't tell her, the school will. If the school won't tell her, a social worker will. If the social worker won't tell her, then the police will. And if the police won't...the coroner will. Someone will tell her someday. For heaven's sake autism is in the news every day. Those people say they know what they are talking about! Surely if he had autism someone would say something!
Her desperation reminded me so much of my own pain; pain that I work very hard to suppress so I can function. You see, I need to be genuinely excited about princess fantasies and yellow soccer balls if my kids are going to have any quality of life. I need to squeal with delight when my 5 year old goes into the bathroom and puts his bacteria and parasite laden feces on the floor instead of smearing it into the carpet, because, this, I am told, is monumental progress. I need to act as though all these events, happening while our nation knowingly maims and destroys its own children under the guise of preventative medicine, thrill me to pieces.
"We’ve gotta go. Have a good day! Bye Ahmed! Liam, Mads! Say bye to Ahmed and his sister!"
Ahmed’s mother’s eyes locked on mine with the intensity of a discovery scene in a dramatic film. All the way to the car, she watched me.
She knew I knew something that could have helped her. She knew I knew, and did nothing.
1.1.) How do my actions in At the Park with Ahmed compare to your pediatrician’s reaction to your questions about autism, your child and vaccination? (Hint: We both have information we are not sharing)
2.2.) Why do you think I chose not to share what I know? Why do you think your pediatrician chooses not to share what he knows?
3.3.) I used to think the lack of proper storage for my shoes and toting a bag from last season (unless it was truly vintage) were genuine tragedies. How do you think my life has changed since autism?
4.4.) What do you make of my desire for my neurotypical son to have time free from autism to play with other neurotypical kids?
5.5.) My decision not to engage with Ahmed’s mom was an act of cowardice. Yes, I was tired. Yes, I had a lot of viable excuses that I later used to assuage my guilt about not helping her. How do you think you would have responded if you were in this situation? (Think about this one long and hard, write the answer down and memorize it. Since a new parent is sent to us courtesy of mainstream medicine every 20 minutes, you will soon have the opportunity to find out.)
LJ Goes (The Rev) is a Contributing Editor for Age of Autism, Co-founder of The Thinking Mom's Revolution and Executive Board Member for TEAM (Together Everyone Aligns Medically), a non-profit bridging the gap between awareness and action.