No Judging Please - This Is Our Living Nightmare

Today my heart is heavy. Another Autism mother burys her beautiful child and will never be the same. That child is Mason and his story is so close to ours that it creates a sick panicky feeling in my gut and a lump in my throat the size of the world. 

Mason was 5 and had Autism. His sister was taking care of him when he escaped out his bedroom window to find a nearby pond full of delightful water that most Autistic children are drawn to. He drowned.

You ask, "How can this happen?" You wonder, maybe judge, "Wasn't she watching him?" I'll tell you - it happens fast.  Faster than lightning.  You cannot judge, all it takes is an instant. If you judge her, then you judge me, for Emily has escaped as well.

The first time was about a year ago. Everyone in the house was going about their business - the boys watching TV, and me folding laundry in the other room. I should also explain that this family lives their lives in 3-5 minute increments - meaning, every 3 to 5 minutes, someone checks on Emily. Checks to see if she has got into the lotion, shampoo or soap. Checks to see if her diaper is off and she is smearing her feces into the floor. Checks to see if she is downstairs playing in the cat box. Checks to see if she is in the backyard eating mud or sand. Checking, always checking. We had just checked on her...she was safe. I walked into the kitchen and I just KNEW. I felt it. She wasn't in the house. Panic races through your body and grabs your heart and your blood turns to ice.  It felt like it took forever to get to the front door, and once I did, I could hear the honking of horns. Oh God....NO! There, running down the middle of the road at dusk in a diaper is my daughter. Oblivious to the traffic, the horns, the screaming coming from her mothers lips - all she notices is how wonderful it feels to go fast and feel the wind whip into her body. I've said it before, but it bears repeating - SHE IS FAST. I catch up with her a block down the road, pull her onto the boulevard and weep.

The next day, locks go up, barricades are created, and everyone is on high alert. We are safe....or so we think. The thing about children with Autism is that they often have a one track mind when they want something and that thing becomes their world for that moment in time. Nothing, NOTHING else matters. Most often they lack the ability to sense danger, the ability to be cautious. Emily has no fear. No fear of water, fire, strangers, cars, dogs, height, or anything else you can think of that a neurotypical child would be cautious of.

Fast forward to this summer. A brand new park was put up in the neighborhood this summer, and although you can't see it from our house, it is just across the street and around a corner. Emily was playing in our fenced in backyard in the sandbox right under the livingroom window. Ben wanted to play UNO. So, I checked on Emily, and sat down in the living room under the window to play. Shuffle. Shuffle. Deal. "Ben, hop up and check on your sister please" A look of terror spreads across his face as he turns around, "MOM! SHE"S GONE!!!" Oh God, how can that be? I just looked into her eyes, just told her to not eat the sand, just to play nice. If the front door wouldn't have opened for me as I pounded it open I swear I would have made one of those people cut outs like you see on the cartoons when they go through a wall. Where, where are you baby? Oh God, WHERE ARE YOU!?!? I see no cars askew, no blood in the street, hear no cars honking and say a quick silent prayer to God for that. THE PARK! Taking off in my bare feet, I sprint towards the park and I see her, running towards the slide, sunlight bouncing off her hair.

Catching up with her I swing her up onto my hip and hug her as my tears wet her face, her hair, her smile. I can't hold her tight enough. I never want to let her go. "Shlyde!" she points, and laughs. She has no idea. All she wanted to do is slide. 

As we walk back, a car pulls up and a 20-something girl gets out. "Are you her mother?" a snotty tone rings out in my ear. "Yes, I am" I replied, now noticing how out of breath I am. "Well, what kind of a mother doesn't notice her kid missing? She was almost hit by two cars, one of them being us! Seriously, weren't you watching her?"

I wish I could tell you everything I said to that girl that day. Some of it I honestly don't remember, some of it I cannot repeat because my mother reads this. But I do remember saying to her, "It's called Autism, Google it B*tch." Anger. Fear. Exhaustion. My heart pounding and my legs screaming at me, I carry my daughter back to the house, put her on the sofa, and call my friend who also has a child with Autism and he wanders too. I start to hyperventilate as I choke and sob and tell her my story and weep and weep and weep. So close, I came so close. My Emily, my beautiful precious gift from the heavens could've been taken away from me in an instant. 

She had squeezed her way out of the backyard gate through a space that my cat has a hard time getting through....she wanted to go to the park. She wanted to slide.

All Mason wanted to do was play in the water.  And now, we all mourn the loss of yet another child and our living nightmare continues.....is our child next?

A School Bus Full Of My Memories

Emily started school this week, which mean all last week I worried. I worried about her new schedule, her new teachers, therapists and paras. I worried she would meltdown, throw things, hurt herself and other people with her outbursts. I worried she wouldn't transistion well, be counterproductive, and most of all, miss me.

One worry by one worry she squashed them. Squashed them all. Her new schedule (afternoons this year compared to last years mornings) suits her. Her new teachers, therapists and paras - well, she can't stop hugging them and she lights up when she shes them. Meltdowns? None to speak of so far, and her transistioning has improved so much since last year her old teachers are "wowed". And, yet, the last one - the last one is the hardest.....she doesn't miss me. At all.

Her teachers suggested she ride the bus to and from school - it would help establish her routine for her and set her up for the transistion into school. I reluctantly agreed while selfishly inside I sob, "But what about me? What about my routine? My transistioning?"

This is the first year I have put all my babies on the school bus this year. Well, they are not babies anymore. Noah is a freshman and Ben is a second grader but every day of every school year since they were 3 I have dropped them off and picked them up. Eleven years of listening to music and singing. Eleven years of asking about their days and listening to the answers. This year, "POOF!" it is gone like a flash of lightning. I watch them walk to the bus stop and get on and I am jealous of that bus, listening to my babies jabber to their friends and carry their precious bodies to school. I am sad as they drive away, leaving me alone in the driveway with my lukewarm coffee in my jammies. Towards the end of the day I check my phone a thousand times for a call that says they have missed the bus so I can pretend to be annoyed when inside I would be elated to go get them. The very least I can do is pace outside in my driveway and pretend to weed my garden until I see them hop off that bus and smile at me.

So when Emily's teachers suggested this, my heart sank and I felt it thunk against my feet. She is my last baby, and I thought I would have more time. More time to look in the rearview mirror and watch the sunlight dance against her hair. More time to listen to her ever increasing recognizeable speech, not caring that most of it is scripting from animated movies. Just those few extra minutes I get to see her smile and listen to her laugh.

This is a new pain I have not experienced. And it hurts. Even if it is for her benefit, I am so reluctant to let her on that bus. So reluctant to let them experience the joy that is my daughter. That is my right. And for the greater good, it has been stripped away from me.

No longer will I get to hear her say, "LOOK! Ish my shkool! Emmees shkool!" No longer will we get to walk hand in hand to the car where I put her in her seat and she looks at me and smiles and says, "Cshicken? Joooce?"

Oh, I know I will see the joy in her face when she gets to ride the "Shkool bush" Watch her run up to it like it's a rocket ship to the moon. I will get to see her explode with delight when they drop her off and she runs into my arms....and in time, I will get accustom to this new joy and forget the old ones. But today, I feel a little bitter as the School Bus drives away with all my memories....