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At the Park with Ahmed

PlaygroundManaging 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.  

Discussion Questions

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.   

 

Comments

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Maybe it is the joy of being Aspergers, myself, when I notice, I feel the parent out to determine whether they realize something is off, try to gently hint if they don't (usually suggest checking out the playgroup at our local Children's Center, run by therapists as part of the State's Early Intervention program), if they are frank, so am I. The sooner the children get help, the sooner the family can make progress toward understanding and overcoming. Only once, in ten years+, has a mother responded with anger; and she later thanked me. Now I even offer micro-grants and a therapy team to get them started on the path toward addressing their most pressing concerns. I talk to every pregnant parent I can to try and help prevent it from happening, and try to help mitigate when the damage is done; otherwise, how could I meet my own eyes in the mirror?

You know, when I found out my son had "A" I told family members. Classically, he'd been ahead of his markers, but suddenly stopped improving. On a family visit home, my sister in law who is in education, said she knew something was wrong when he didn't answer to his name at the age of 8 months old. She couldn't bear to tell me because I was so obviously overjoyed with my son and clueless.

Because she didn't tell me, I got to enjoy another year of denial, of thinking that he was not playing with the parachute at gymboree because he was gifted and too smart for it. . . I wouldn't give those 12 months of denial back for anything. I got to be totally, totally, joyfully happy being a parent (he was born when I was 39 after many years of infertility--naturally--so he was my miracle). When the endless circular grief started after I found out, I would look back to that time and thank GOD I got to totally enjoy my son without the asterisk of fear, and not know, for a long time.

THAT SAID, we found out early enough to make a difference--at 22 months. ANd at that time (2003) there was not much in the way of early intervention at the earlier age my sister in law noticed. On the other hand, had she told me, I might have immediately researched autism and discovered to stop shots, as I had already noticed he reacted to each vaccine, minimizing the damage he incurred. OR I might have been angry at her for a solid year until it was confirmed by 'experts' and not done anything different.

So I do not judge your decision, but faced with the same situation, I have chosen to hint "My child had issues playing and he is much better now. It turned out he needed special therapy. I think it was caused by vaccines, actually. Here is where you find out about how to get help." That way I would be giving her help, and hope.

That said, I do not judge you. Sometimes, we have to join into another's denial, just to keep our own sanity, and to keep ourselves afloat.

If someone I didn't know told me something was wrong with my child from an observation at the park and mentioned autism, I would not have been receptive and quite offended. Only someone close to me pointed me in the right direction. Even when we were doing speech and Luke wasn't progressing, I still rejected the A word, so what would have been the magical thing you could have said without insulting her? I'm dealing with this right now but it's closer to home. My overly pink cheeked cousin's daughter who is 4, pranced on her tip toes and flapped during a holiday get together at Christmas when meeting everyone. Then later, when there were kids all over for her to interact with and she colored in the corner, alone. She spun in the kitchen when her parents stepped out for a moment and had to hold her purse the entire time. Years ago, when we found out about our son (when their child was newborn) we said that beyond a shadow of a doubt the vaccines changed Luke and warned them to be cautious. They guffed at us and said the evidence doesn't support a problem. Now, unfortunately their daughter more than likely has Asbergers and I'm crushed for them. And I'm scared to ask or say anything. Do they even know? And more importantly, if they don't, they'll continue on the same path with their newborn son who's so sweet and adorable I can't stand it. I prayed a hedge of thorns around him, but... heaven help us. I'm so sickened now when I see new babies because I know. Some of the parents are going to go through needless heartache like we did. We are a success story after four years of therapy and an organic diet. But what if I'd listened to that small voice and not my Dr.'s overbearing, fear mongering one. As warriors, we have to start at the top and be a louder public voice,so we don't have to have these awkward times at the park with desperate parents, which seem to happen to us more and more of the time when we are looking for typical kids to play with and model after.

"... One has just turned 8 years now and sister is not far behind him...the two older boys had every vaccine and have medical files the size of a Harry Potter book yet the younger ones have never, ever been to the doctors and have no medical files....."

*********************

I think you just answered the second part of Discussion Question 2.2). "Why do you think your pediatrician chooses not to share what he knows?".

I'm 100% with you Angus, autism IS vaccine damage.

IMO, Ahmed's mother knows that her child is autistic or perhaps different. If she does not, she will learn about it soon. I believe it was sensitive from you not to push autism diagnosis on this mother. She is trying to engage her son in social activities, and she should, but it does not mean she is not aware of her son’s problem. Your story is a vivid testimony of desperation of mothers to make their autistic children “normal”. We all should grow more and more angry at the sociopathic political system, which for profits or other ill intentions destroys its young. Anger will mobilize us to revolt.

Lisa,
You were no coward. You listened to your gut. And your gut told you Ahmed's mom was not going to be receptive to a chat about autism.

As Benedetta wisely pointed out, there are tons of books out there that love to tell us the milestones, and Ahmed's mom probably has three (in the trash - where I threw mine). You could see the mom was in denial mode, and DENIAL is only stage one in the five stages of grief. She has four to go, and number two is ANGER.

That's why it's probably not a good idea to walk up to a strange mom in the park and tell her her kid has autism. Safer to be vague - and give it a positive spin:

"There's a lot of great help out there for children like your son."

If they want to know more, they'll ask you. Otherwise, you've at least planted the thought that all is not well - while giving them some hope.

Concerned Mom, Lisa was anything but indifferent to Ahmed's mom:

"The psychic pain of watching this desperate mom .... My heart ached for her. "

I am sure people on here know this but I have two unvaccinated ,zero,zilch,nothing to do with pharma vaccines or ,oral... since born.One has just turned 8 years now and sister is not far behind him...the two older boys had every vaccine and have medical files the size of a Harry Potter book yet the younger ones have never, ever been to the doctors and have no medical files...well still twiddling thumbs on that one...forgot to say our second oldest is aged 15 with the mental age of around two years old (school assessed) and they call it Autism ,I say its vaccine damage…

But make your own mind up!


Angus

thank you for sharing that poignant story. I don't know what I would have done in your shoes but I am trying to get ahead of the game.
My daughter's friends are now in their late 20s and having babies. Most of them have known my son Andrew since he was between 6 and 12 years old and they know how deeply autism has affected him.
As each one of her friends has a child I write to them. I tell them the latest statistics, encourage them be wise when it comes to vaccines, to be well informed and to please get in touch with me if they have any questions on how to hopefully keep their child "from developing Autism."
So far none of them have responded in any way but I feel good. Even if they think I'm a nut, I figure at least I'm making them at least somewhat aware about the 1 in 88.

I'm a part time nanny to my dear friend's 23 mo. old twins, NT girl and *undiagnosed* boy with no speech, all manner of stims, major sensory issues, clumsiness, and so on. She's in major denial, and we're now going on 2 months worth of pointless Early intervention therapy visits. This little boy's eye contact has increased(but only with people he knows) and so the EI lady annotates each visit with things like "he smiled at me", etc. It's giving the mother false hope. She hasn't watched the countless Youtubes of stimming that I have, or read up on Gluten's opiod-like effects on the brain, or the concurrence of rashes with gastro issues, etc. I think a lot of mothers with undiagnosed children only worry about the speech delay because that's the main red flag in the "Well Baby" visits. Now, this boy is "pointing", but not really. He is pointing pointlessly, like echolalia. He is pointing at nothing, or pointing at things he's seen his mom point at, to teach him "how to point", because this is the other red flag in the "Well baby" visit.

At least in our last EI visit the therapist noted that he pointed "incidentally", but only after I mentioned that he wasn't really pointing.

I am scared and sad. Scared because his vaccine schedule never seemed to match up with the "official" one, and I'm wondering if they're going to stick him...again.

Anyway, she can't afford a fancy pediatrician and the one she's been going to has told her the same things we all pull our hair out over when we hear - he'll catch up, etc. HIs next doctor visit is in a month and I always go with her. I don't know what to do. It will be my moment to put up or shut up....until he's in school, or comes down with a major illness? Who knows. I am crying typing this.

Incredibly moving post. But ultimately, I disagree. We may live, eat, and drink autism but in actuality, many people still dont know. My husband is questioning should I really opt the kids out of vaccines. Isnt it too risky? They dont know the sky is falling. We really need to talk about it, even when we are tires. Especially when we are tired. They wont always have you there to look out for their interests. And anyone, but especially a mom who is struggling will listen to to a mom who says, "my other son is home with his dad, but when he was little..."
God bless,
Holly
Adoptive mom to 11

Now then,Pharma talks...

Murdoch ,and baby Murdoch James,are unfit to operate a International company....
Murdoch Unfit to Lead Media Empire, Says British Report

http://www.nytimes.com/2012/05/02/world/europe/murdoch-hacking-scandal-to-be-examined-by-british-parliamentary-panel.html?partner=rss&emc=rss

Says it all the stats are made up by the Murdoch`s daddy Rupert, and baby..James

Angus

An hour after reading this story the constriction in my throat just won't go away, nor the strain in my eyes, nor the slight sniff when I breathe.

Why are you so sure she didn't know? It sounds like she was just trying hard to engage her child with other children. Perhaps on other occasions he has engaged with other children. Many children on the spectrum have days when they are more engaged than others. Perhaps this was a bad day for him. The up and down can be very frustrating to a parent.

I also don't think it is right to say that he doesn't even know what a friend is. That is the dehumanizing myth that the media wants us to believe about kids on the spectrum. Society will not care as much about them if they are dehumanized. Most of our children care for friendship and love more than the average person. Their illness prevents them from showing it.

I think you actually did the right thing by not suggesting a label to Ahmed's mom. Early intervention (both therapy and biomed) did nothing for my son and, personally, I think it's overrated. Your activist spirit is admirable. Perhaps you can channel it into pushing for a cure for our kids. Their bodies are hurting sooo much and many of them are not getting much better despite early intervention.

My experience has taught me that mothers do not necessarily accept what another mother will say about her child. So, I am not so sure that your saying anything would have been the braver thing to do. Ahmed's mother seemed to be in denial. Saying something might have alienated her even more. Besides there is possibly a next time at the park, and then you can explain your own situation without any of the awkwardness you experienced.

Lisa

Seriously, there is almost nothing you can do in such a situation - which you've described so skillfully here - but there is always the thought at the back of your mind that there may have been. One backs off I think in the spirit of mutual self-defence (and no doubt with a feeling of utter self-defeat as well). If you really knew the person then you might be able to think how to help them: with strangers it is an impossible risk.

John

Lisa,

Similar experience here. One of my coworkers has a 1 year old son. She has three other older NT children. The baby is her and her husbands first son and she said her husband is so proud that he has a little boy. I asked how the baby was doing and she proceeded to tell me the baby is not meeting his milestones. He's not talking yet. Has poor muscle tone. Not able to sit up. They already have him OT. She seem so unconcerned. Her attitude was upbeat. I wished her luck and told her if she ever needed any guidance to call me. I never mentioned the "A" word but you can bet I thought it. Ignorance is bliss. She has no idea what she's in for I'm sure. On a side note there's a little subset of autism parents at my office. Up to 7 last of us I counted.

Thanks for making me feel like I am not alone when there are days I can barely fight for my own son, much less all the new kids entering our 'world of autism.' I advocated in many forums for 10 years- on tv, radio, magazines, church, public speaking events- and then one day it hit me like a ton of bricks between the eyes. I was an autism advocate to escape the hopelessness and inadequacy I felt in healing my own son! So, last year I quit all of advocacy efforts, at least for awhile. It's the best year of our journey. I am now fully engaged in my son's life and much more at peace. I have taken time to learn from other parents. It's been a huge blessing. Yesterday I saw a young mom at school, chasing around her 2 year old. He would not look at her or anyone else. She explained that he had been in the ER with severe asthma and allergies and next stop was the neurologist. I looked at her pretty manicured nails, tanned and toned legs in her tennis outfit, and thought to myself "her perfect world in perfect suburbia is about to come crashing down." I told her she should seriously consider having some food allergy testing done and some immune function tests and gave her the name of a biomedical doctor in town. That's all I said. I pointed in the right direction- but I didn't have the heart to describe for her my 10 year journey in 10 minutes. I prayed for her. Another one...

I like John Stone's answer - some justice there.
Except they never will - it will end up being the schools.

Goes;
Don't worry about it, there are tons of books out there that loves to tell us the milestones; That was why I was so riding high and proud when my two walked at nine months and 10 months.

I am sure she knows he has not measuring up to those milestones, and there are plenty of places to find her answers and help beside a Mom out on a playground that she does not know nor would believe, or trust anyway.

I paid good money to get mine into preschool - so they could tell me that there was a free place called Nelson County Early Child Development ran by I believe the federal government. They actually worked on speech and motor skills. The peds were suppose to tell me about it. The Early Child Development people wanted to know how I had heard about them - and then in the same breath - from the ped ???- -- ha ha to funny!

But that was years ago.
Now I am trying to figure out if my son had rights that he did not get when it came to a standardrized test to get his liscense in electronics. Did he have a right to have the test divided up; or not timed. I got all the paper work together and turned it into the college but he never used it because we knew they would frown upon it. But now at the end of it all what should I do on this standardarized test???
I admit - I came out of this deal - smelling like a rose -- I have a wonderful young man, but even smelling like a rose -- still wondering at the end of this educational journey?

People here are so much more articulate and capable than I feel I'll ever be. Even writing a short comment, I agonize (or at least stew for far too many moments) over how to say one or two meaningful sentences. In conversation, I'm usually in over my head, even without the subject being something tied closely to powerful negative emotions.

This story may be pretty common in lore(?), but I just recently heard it:

A man is driving along a winding country road, when coming to a bend a driver of an oncoming vehicle in the other lane sticks her head out of the window and yells, "PIG!"

The man, irate, swerves away from her and steps on the gas and barrels around the bend right into a large hog in the middle of his lane.


I don't know how to tell someone that they may have driven their child into or collided with a Pharmaceutical Injury for the "Greater Good" (PIGG)!? Or, how to tell someone they may need to drive on the "wrong" side of the road at least some of the time to avoid injury, apply the brakes against their doctor's recommendations, or yeah, it sounds like I think the whole world is conspiring when I go into this but...

I have a friend, who has worked in the medical industry, with a child they are concerned about and at most in talking about my daughter's issues and some other health problems in our area, I've ventured to say that something really seems to be affecting our immune systems. That suggestion basically inspired silence. I don't know how to say more. I don't even know if that was not saying too much, all while knowing it was not nearly enough.

5.5:

1. I have endured so much pain that I can't deal with an iota more. Nobodys. Sorry.

2. Nobody else gives a S$%T so why the heck should I. Let the numbers grow some more and let the S^&T hit the ceiling. It already has BTW. Even Nancy Snyderman looked depressed when rattling off the children type II diabetes numbers. Her sad eyed lined pasty face brought me so much satisfaction, it actually took away some of my pain!

This story reminds me of the day I was at the playground with my son. I noticed two other boys, brothers, about age 9 and 12 who were rather hyper running around the playground. One of the boys came over and impulsively grabbed my drink and started to quench his thrist. His embarrased mother came right over and apologized. NBD I told her. On the autism behavioral ricter scale, a kid grabbing my drink doesn't even register a blip with me.

She told me both her sons were both on the spectrum. It was a good icebreaker b/c I revealed my son too was on the spectrum. It was actually glad to meet another autism mom. I feel like I'm in some kind of secret club. Maybe we need our own club sign. Like Mork's "Nano, nano" or something. Maybe being tuned into the signs are enough but I'd feel funny approaching any mom not matter what their kids age and talking autism unless the parent revealed it first.

You did the right thing by saying nothing. It is a taboo in our society to diagnose if we aren't doctors--those people are called quacks.. Yes, it does mean that tons of valuable folklore information is not transmitted, but these social taboos are powerful. My sister's grandchild is not talking and he is 24 months old, but then her other son is a vaccinating family practitioner and it would be very taboo to bring up vaccination=autism. And this little boy has the skin rashes that worry his mother who is a very busy working woman and needs to have all those shots for daycare, etc. etc. People don't realize until it happens to them how much work goes into having a sick child so they go along to get along and yes, they do have to find the way themselves, even though for those in the know it's like a slow motion train wreck.

LJ, LIke many of the other parents have said, you made me cry too. You brought me back to the time I was at the park with my Liam and my sister said, oh so gently, "jamie I've been up reading all night, and I think Liam has autism"....

I was so very, very angry at her then. But, I knew she was right. Now, I've been in this same situation twice, with other mom's in other parks. Both times, I did exactly what you did: nothing.

If my son with autism is there, I have said in relation to his erratic behavior: "oh, Liam has autism..." and hope the mom can find the correlation.

But to diagnosis her kid for her? To be the one that makes it all real? My sister-- who has been my dear friend for years-- did this for me and it was almost the end of our relationship. I can't imagine doing this for a stranger.

So, I'm with you. In your sadness, in your silence, in the frustration at "preventative" medicine, in all of it. Thanks for writing.
-Jamie

Putting myself in that mother's shoes, there was a time when I didn't know and when most of us didn't know. Truthfully if someone approached me back then and suggested autism, I'd have been shocked and probably a bit put off. Afterall autism is rare isn't it? After I dragged my son in for a hearing test and was told by the audiologist that his hearing was fine but that he had a language delay, I went on line and googled "language delay" and kept getting links to autism sites. That's when I knew. Even when all the red flags are present, I think autism something a parent has to realize/ discover the truth for themelves.

Shame on you. One word of encouragement was too much? You can 'use this time to compose an email to the local press about the CDC's gross miscalculation of 1 in 88' but for this poor woman right in front of you, you cant manage to say a quick "no problem" or "kids have bad days"? You didn't have to go into a big autism spiel about diets and doctors and 1 in 88. Autism didn't even have to be hinted at. Two moms in a park, one is embarrassed by her child's behavior.... we've all been there, including moms with typical kids. Ahmed's mom was looking for understanding from you, not answers. When parents of kids with autism are 'too tired, or 'not in the mood' to give an acknowledging nod or an understanding smile or a 'hang in there, you're not alone' to another struggling parent, it's the CHILD who suffers because his/her parent ends up too discouraged or even burnt-out to be effective. I hope you never have to suffer the indifference you showed Ahmed's mother. And if you have, I'm sorry for that but then shame you because you know how it feels and did it to another parent anyway.

LJ, darling. Your decision not to engage Ahmed's mother was not cowardice; it was avoidance, and likely exhaustion and sadness, too. Ahmed's mother was in denial mode at that park, so there were no words you could have used to convince her that there is something wrong, much less terribly wrong, with her son. That woman still had hope for her son, and expectation, that a few words from her could alter his behavior and get him to engage your son in play. Most parents in denial don't want to hear the ugly truth. I was one of those parents once.

Seven years ago, a neighbor suggested to me that my children might be autistic, when she noticed them not obeying my directions during a Halloween Parade in costume. I remember feeling outraged, and I told her she was mistaken. I never wanted to see her face or talk to her ever again. I was angry at her, and my anger persisted while I remained in denial. After she suffered and recovered from breast cancer, I forgave her, silently, to myself. As she had never been a friend of mine, I felt no need to formally forgive her in person. She never knew how angry she had made me in the first place.

I think you did the right thing in the park, LJ. You were low on energy, and you might have faced an angry mother. Her child's pediatrician will have to break the news to her when he gets around to it.

Your extremely well-written and heartfelt article moved me to tears on so many levels: First--7 years ago I had a strong suspicion that my daughter's very premature surviving twin was autistic and encouraged her to have him evaluated at the Dan Marino Center. Problem: 7 years ago no one believed in early diagnosis so they told her to come back when he was 3.....She has since moved away and I still have my suspicions.

Second--I'm working on research and educational projects with service dogs and was in Oregon 2 weeks ago where I met a little boy, who happened to be named Noah. His improvement due to his service dog has been unbelievable. A service dog might really help alleviate stress in the family with an autistic child. If you are fortunate enough to find the right provider, someone who has experience with autistic kids and families, your life will change.

Could you have helped the mother deal with her son? Perhaps, but not likely. You're not the first person who has recognized the signs. If it were I, I might have given her my name and number and suggested that she call if she wanted to talk about her son. She might have accepted help at a later date, but not while she was suffering from the shock of his behavior at the playground.

Check out our Facebook group, Service Dogs for Autism (https://www.facebook.com/pages/Service-Dogs-for-Autism/302330739798528?sk=wall). It might help you.

You made me cry. I think we all have many of those "park moments" like the one in your story and the one Stagmom posted earlier in the comments. It's feelings of sheer desperation, trying to figure out those "what am I doing to my kid that he/she won't look at me" or "what's wrong with him/her now; he wasn't always like this" or "something has happened and he/she's different and I can't be the only one who sees this" moments. I have also not forgotten my "views of delusion", when I was so desperate to not have "something be wrong", that I was more than willing to "see" skills and abilities that weren't really there! I guess the most significant reason I cried is that, for parents of a child w/Autism, TIME is our most precious commodity. It doesn't matter how rich or poor or deserving you are, none of us can buy time back. The younger they are when they get diagnosed, the more opportunities there are to affect (hopefully) positive changes in our children. Being (what seems like from your narrative) an immigrant who in all likelihood doesn't know enough about the healthcare & education systems, just compounds her difficult scenario. Sorry you found your self in this place. My son is now fairly high functioning, but that wasn't always the case. I have a neuro-typical daughter that I too try to make as many moments as possible that are not driven and/or surrounded by Autism. I've been in the park, at the mall, in church in this scenario. I've taken a deep breath and gingerly tip-toed in w/leading comments that gets us into a discussion about "Autism". I've had every reaction from bliss, relief and gratitude to "F*ck off, B*tch". To engage or to walk away - neither choice is easy. Thanks for the thought provoking piece.

2.2 doubt. You think you know what you saw but are you sure enough? I think that's why the Peds don't tell either. They look at some kid for like 30 seconds. Can they break a mom's heart based on that?

Of course, we'd all be better off if someone had told sooner but I think it is doubt that stops people even more than cowardice or tiredness.

Hi Lisa

This is one very unpleasant job I am very happy to leave to the medical profession!

John

The playground - Doylestown Pennsylvania 1997. I was pushing Mia in a swing. And begging her "Use your words" to tell me she needed another push. I am 33 years old. Frustrated. Why won't she tell me "push?" I know she knows the word. I know she loves to swing. Why won't she tell me to push her? Why isn't she looking at the other kids? Why? Why? Why?

LJ, you brought those tears, once more...

Re-posting a comment I write on another piece few days ago.
----------

The 1 in 88 are children born in 2000 and still exposed to Thimerosal.
Why is this statistics so delayed? So difficult for CDC to get the statistics for 8 year olds for 2011 (not 2008)?
No. But that will be children born in 2003, when Thimerosal was already phased out.
This will show as reduced numbers, ergo, Thimerosal was a major factor in the autism epidemic.

So, what are they doing?
They are buying time until the DSM-5 is out and then they can release the next study who will show a clear drop in autism. However this will be explained not as a "real" drop but due to DSM-5 criteria changes.

In other words, they've been working on the problem of what to do with declining rates after Thimerosal was largely phased out, and now they have found their way out of it.

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