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 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.) 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.) 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.) 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.) What do you make of my desire for my neurotypical son to have time free from autism to play with other neurotypical kids?
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.)
~The Rev
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We all do the best we can – you are an amazing mother for wanting to provide that “normal” experience. I often wonder how much I would drain from my pension for an hour of “normal.” Friends with neurotypical kids say I am wrong for that. I say – that’s easy for you to say….tired, defeated, stressed, nauseated by sleep deprivation are only a few adjectives I use to describe myself. You are allowed to choose your battles – that day at the park, you chose to provide a brief release from your overwhelming world & an environment that wasnt consumed by autism for your 2 NT babies. You also chose to let Ahmed’s mom continue for a little while longer in her world where it all would be ok.
My daughter is 7 and can be aggressive so I am the helicopter parent. All the other neighborhood kids run freely & Libby has her tag-a-long mom :(. The neighborhood kids have more than accepted me & I think like me. I offer toys, band aids, help with homework, and anything else they require to guarantee my girl a position in their social circle.
We all do the best we can & most days I’m just happy to remain vertical 🙂
Tears. This hit me in the heart strings. I was that little boy’s mom too.
Sometimes I just cant either…beautiful piece. It can feel like the stars have to align, they have to be ready, you have to have the energy, it has to be the right place and time. Xx
Oh, just make clear, you have to have some kind of conversation happening…otherwise you just come across abit nutty! Lol!
This is hard, but I usually always say something…with love, kindness and compassion. And as those desperate things start to fall out of their mouth, the things they have been told again and again, to reassure, fob off, whatever, I always agree that yes, their child could just be “delayed”, that yes their child is definitly not as bad as mine. It could all be true. But I also make very clear that I was told the exact same things. If my clearly Autistic non-verbal six year old is with me at the time, it is suprising how quickly their faces change. You can see it in their eyes. I always rattle off afew basic early signs websites, tell them how important early intervention is, how long the waiting lists are, how common it is for peads to shy away from diagnosising early on, how the Autism label is not a definition of their childs future, and finally I always leave them with a biomed website. And the message its treatable. I dont usually get into vaccines, unless they are open to it or ask what I think. The message that I think is so important is to follow your gut as a mum, even if you dont want to. I think then when they go home, if that desperate doubt comes up, they might have some places to start, to start educating themselves. Abit long…there have been times when Ive just nodded when they’ve exclaimed that their childs not autistic, their mother-in-law said so, and gone ok. If you ever have any concerns you can always look up the early warning signs online. Sorry about the long winded reply, typing on my phone, waiting for my coffee to kick in. xx
Sigh. There are days when I really, and I mean REALLY, miss conversations about shoes. And sunglasses. And OMG where did you find that cute little dress that my daughter would adore?? It sucks. I’ve done both the educate and the run away though. it’s not cowardice as much as it is simply being human. Don’t beat yourself up. Every once in a while your other kids DO need your full attention and to forget about Autism too. The thing that gets me is that as much as I want Harry to recover and as much as I know that will happen, I’ll never be free of autism. There will always be another person to help and educate in our lifetime. Even if the madness stopped now and not another child was diagnosed, our generation of Autism moms will always be teaching and guiding others. You can reach many people but you need to take time for yourself too. XO
Me too….I couldn’t do it. I’ve talked to some of the new Moms I work with about vaccines, but they still get their kids all the required immunizations. Now, the same Moms haul their kids in weekly for colds, flus, ear infections, and the like – to only be prescribed stronger and stronger antibiotics. Ear tubes, projectile vomiting, blow outs, allergies….these Moms are constantly in and out of the pediatricians office. I just have this sick feeling about one little boy – if his Mom doesn’t stop the madness, he too may go down in flames. But the moms dad is a doctor, need I say more?
Poignant .A moment in time with a mom who does not yet fully know that a tornado has quietly descended in a park. From 1 to 6 times I see this —per day, except when I am home on my computer writing about it. Yes. 1 in every SIX children now has a Developmental Disability, 1 in 5 Neurologically Impaired. They say that Ostriches can be Brutal and cause harm. I think that when they bury their heads, they are actually seeing a pediatrician or 2. Shell of “Recovering Autism ADHD and Special Needs” introduced on youtube and coming soon.
Well when I get the lump out of my throat, dry the tears from my eyes, and stop heaving…you are an amazing writer you know….I’ll tell you what I do.
Age has it’s advantage. You get more vocal and eager to blurt out the truth after you turn 50. I dunno, maybe years of walking on concrete after we had to pull up the shit stained wall to wall carpet and could not pay for new flooring, or maybe years of doors slammed in my face…something made me both mad at the medical world, and brave.
I say, “Hi, my son was like your child, my son has autism he developed after vaccines.” I go on to say I run a support group, and have extensive helpful information on how to help your child get better, if you want to learn. I take a business card out of my wallet with my contact information on it….and smile and say, “Call me when you are ready to talk.” and walk on. Unless they start spilling right then and there…and sometimes, they do. Amazing how many Mom’s are just waiting for someone to open the discussion door a crack. Other rip the card in half and tell me their child is just fine and to mind my own business…then I really smile big and say, “Wish you well.” and keep walking.
You are already brave, it’s just hard to speak up. She was looking at your two perfect kids and dying inside, but you know that…you have been there too.
Wish you were near, I would share my organic garden with you…I know…Lord do I know about that one…
Be blessed.
Beautiful. So many of us have been there and what to do is so confusing and heartbreaking – there often is no good solution in a situation like this. Thank you for your honesty in putting these words to paper.
Experience is why you didn’t engage Ahmed’s mother. At least it is why I don’t so often anymore… Everytime I open my mouth I seem to get in trouble with someone. On the one level … they are desperate. On the other … you know they don’t want to hear and it will result in anger thrown toward you. Just this week I lost a dear friend because I dared to tell her what she already knew but she didn’t want to be told… It is such a hard hard subject to approach with those who would rather live in denial. Beautifully written. Praying she find help, true help. I have taken to passing out cards with TACA’s website on it.
Melinda, I’ve had a couple of very close friends come back around after a few months or a year…and I hope your friend does, too.
…and this is why my son was 4 before someone–the PhD to whom we paid the big bucks for a diagnosis any autism mom could have whipped out in 1 minute–was brave enough to tell me there really was something seriously wrong with my kid. Oh, I had plenty of people telling me what was wrong with ME and my parenting skills, but no one pointed out my kid was going under. Pediatricians, speech therapists, family members with background in early childhood development, they all failed us. I have urged a couple of friends and even a few strangers to get their kids assessed. Lost a friend because her husband insisted there was nothing wrong with their son. No part of this isn’t heartbreaking.
Lisa: I’m in tears and completely exhausted after reading this article.
You nailed it.
I think the ache in our throats and in the pit of our stomachs when we have these encounters is not only because we are so hesitant to be the messenger (we shouldn’t have to be), but also because we are being triggered constantly back to our own traumatic experiences with our children. We are the walking wounded, similar in many ways to those who have returned from the horrors of Iraq and Afghanistan. The one difference is, they got to leave the actual war behind. We continue to see it play out before us every single day.
Thank-you again for your courage and your strength, and for using your God-given talent to spread the word so others will know what to do and how to respond when they are faced with the same horrible situation.
I love you.
Im trying so hard with my own son, I feel for the woman in the park, I am her. I was in denial because before preschool, the Dr told me what I wanted to hear. I wish someone would have told me something, anything. Now with the diagnosis, I still feel the same, somebody tell me something, anything that will help my son! I dont care if it sounds crazy or if the world of mainstream medicine considers it a waste of time. I’ve come to realize that the only real help I’m ever gonna get is from people just like me. People who deal with this everyday. I can honestly say, when I get help for my son, that I will share what I know. With that being said, I’m human so there will be days I’m sure that I will be drained, busy, or afraid. Not afraid to start someone’s journey down this path, but afraid of the pain that gets reopened once I’ve learned to deal with it. I can see how helping another autism parent is like self injurious behavior. You get something out of it but it hurts. You’re human.
What u wrote in this piece is so powerful. I have seen children who I know are autistic aka heavy metal toxicity. After four years of studying, researching, and living it I know What I know. I feel like I have a secret and I do. I sometimes bravely share it and sometimes I don’t. I am getting more bolder. Pediatricians are giving shots while children are sick. When they die the cause of death is covered up as SIDS. Do we no longer live in a sane society?
Id replace the word cowardice with human. Sometimes there’s so much on our plate that we simply dont have room or the strength to add any more to it. Ive been both “you” and “Ahmed’s Mom”. It was painful not knowing what was happening to my son and Ive felt ashamed at not reaching out to a mom who I knew was going through the same pain. But at the time, things werent going well and I just didnt have the emotional strength to take on anybody else’s pain. My heart aches for you both.
I so understand for your “typical” children to play with their peers. I want my son to have h is own space and time with friends.He always tries to be patient and often includes her.His friends parents are also very kind. He needs his own time and my husband and I try to make a big deal out of both their accomplishments so we can feel like they are getting our all.It takes it toll but I have to hope it will make a difference in both their lives.
When I see that deer in the headlight look I once had in other parents my heart breaks.How do you tell them that all their hopes and dreams for their child has been stolen.How do you tell them the people responsible will never pay for the life they have stolen.Then again some times their denial and your truth can backfire.So many times I’ve seen them do the how darre you say there is something wrong.Not my child. It may be hard but sometimes keeping it to ourselves is all we can do.
Rev, this one touched me deeply. It’s so hard to encounter those parents and their kids. You want to tell them, but it’s a crap shoot. They may be just waiting for someone to say it, out loud, to them before they can accept it. Or, they may want to “shoot the messenger”.
I so understand for your “typical” children to play with their peers. I want my son to have h is own space and time with friends.He always tries to be patient and often includes her.His friends parents are also very kind. He needs his own time and my husband and I try to make a big deal out of both their accomplishments so we can feel like they are getting our all.It takes it toll but I have to hope it will make a difference in both their lives.
When I see that deer in the headlight look I once had in other parents my heart breaks.How do you tell them that all their hopes and dreams for their child has been stolen.How do you tell them the people responsible will never pay for the life they have stolen.Then again some times their denial and your truth can backfire.So many times I’ve seen them do the how darre you say there is something wrong.Not my child. It may be hard but sometimes keeping it to ourselves is all we can do.
I’ve had to do it too many times to count over the years. I find it incredulous that pediatricians are so bad at diagnosing our kids when any of us can spot an autie kid at 100 yards on a playground. Here are some useful tips on what to say to that unsuspecting mom. http://tacanowblog.com/2011/10/26/don%E2%80%99t-shoot-the-messenger/
Once again, you slay me. I felt as if I was in the park with you. I felt your panic, your pain, your everything. I love you to pieces <3
Lisa, I saw a mom at Legoland with an 18 month old that was, I know in my soul, autistic. He was overwhelmed by the helicopter ride. (too loud). He started screaming, at first everyone was sympathetic, then they looked away, then they got annoyed. How do you walk up to someone and break their heart? I couldn’t do it. But I know what she’s going through now.