The Child Before the Diagnosis

We were standing on our patio and a plane flew close above us. It was loud and very easy to spot.

“Look guys, a plane!”

My 20 month old son followed my finger and he pointed too and smiled, “Ah, plann,” he said. I smiled with him.

It looked nice against the crisp sky with everything around us covered in snow.

I looked over at my daughter who had her back to us and was smiling too. She was still looking opposite us into the sky searching for a plane.

The tears rush like a falling river upright to my eyes. I can’t speak anymore.

It happens at Stop and Shop, at work on my break or when I see that mom with her two perfect children when my three year old daughter is screaming bloody death because the shirt we want her to put on hurts her so.

I never wanted my life to be all about autism.

I tell myself that it is ok. She is in a great preschool program where she receives great services, receives ABA in home after school and has an outside OT too.

I advocate. I make sure she is okay.

I research and take advice from other special needs parents. But most of the time I feel like it is not okay and I have nightmares and flashbacks of when I found out.

Mostly though, I want someone to bring my baby girl back to me.

Do you think you can bring her back to me? I used to have dreams of her walking away with a stranger who reached his hand out to her and she took it.

I would be screaming her name and she never turned around. When I screamed nothing came out. No sound.

I tried and tried to call her name.

She just held on to the hand and walked away wearing her little red coat smiling. Slipping away.  And I know she would do that.

When my baby ran between the other twenty children at the splash pad by the library she never turned to see where I was.

Holding my newborn, I timed it…2 minutes, 5 minutes, 10 minutes, 20 minutes. How long before my child looked for me?

I watched the other children turning and smiling at their mom. The truth is she probably never would look for me and she would likely walk into a street get hit by a car or walk aimlessly into a river like she has done before.

No, it’s not funny. She is not fearless. She is not a tough, courageous kid.

She has no sense of awareness, no sense of danger and her attention span is very short. Her pain threshold is incredibly high.

She can take a bath in ice water smiling behind her blue lips and she could also take a bath in boiling hot water.

When they told me she had autism that’s when they took her from me. 

Do you dream about having a conversation with your child without their autism? What would she be like?

She would be able to sit still and she would be able to look her mommy in the eyes and instead of labeling she would converse.

She would be the older sister and her baby brother would not be more advanced than her. She would not slip down under the table or miss the baby gate by a foot.

I want someone to bring her to me, all fixed and free and for them to say: Here you go. She is ok now. All done.

Here is the perfect baby you knew with all the hopes and dreams you had seen in her before her diagnosis. The one you looked at when she was born and before she was born even.

All the dreams you had for your unborn child when you were imagining your future child when you yourself were just a child.

When you joked with a classmate about your future children. You did not imagine your child with a disability.

You imagined a running, jumping, wide grinned child that had his or her entire future ahead of them.

I want that back. It’s not fair.

But everything that came before her diagnosis now only makes me more devastated either because I feel so stupid for not having known or because I feel angry and betrayed by everyone.

Even the pictures are ruined because when I look at them now I remember: She couldn’t hold a bottle at 9 months. We could not eat dinner with the lights on.

She did not play Peekaboo. They took that too.

I hear her BCBA, I hear them all. Try this, try that. And I do! Maybe it is this or that. But can you take her Autism away?

At the end of the day my daughter still goes to bed having autism.

“See, you’re going to have a tough time fighting for her because she is verbal. They will all try and tell you she’s fine.” A fellow autism mom told me while we were watching our kids swim and wait for their Occupational therapy.

I glanced at all the kids on the other side of the pool moving their bodies the right way, keeping their tongues in their mouth. It really cuts deep.

My daughter is verbal and the general public thinks that she is just a misbehaved child that needs to be disciplined. One of the moments that hurt the most and I still cannot get over was when I tried to have a playdate for my daughter.

I cried behind my fake smile when my neighbor told me that he didn’t want his daughter leaving with a bad taste in her mouth when my three year old daughter kept telling his typical child to go home.

I told him that this is how my daughter is and she will have to adjust to her friend being her for a visit and it is helpful for my daughter because she has trouble tolerating other people in her space. “No,” he said. “It seems like my daughter needed a nap.”

No, she is not tired. She was far from needing a nap, she was being her normal self.

He insisted she needed a nap. She has AUTISM.

A week later they called to arrange a playdate with my son who is 1 1/2 and not with my daughter who is her age. It terrified me. Will it always be like this?

I need a social story, they told me. I need a social story for having playdates and prepare my daughter. Do you know how many social stories I have for her?

It breaks my heart when people make a face and ask me how old my daughter is when she is screaming and throwing a tantrum at Target: “Oh, boy. You got your hands full!”

If I told you how many times my daughter has disappeared you wouldn’t believe me. And if I use a bagpack and rope people stare too.

She ran from me naked through the lobby of the YMCA. She ran away in a parking lot. She runs away at grocery stores.

She ran away in an open pool area because I turned to give my son his pacifier. She could drown. She could get hit by a car. Someone could take her.

I was yelled at when at TJMAXX she ran away behind the cash registers. I heard the people in line whispering, laughing and then rolling their eyes at me.

How could I lose her? When I wanted to get her the cashier snapped at me I wasn’t allowed back there with the registers open:

“You dont understand. She wont listen to me if I call her. O.K. ‘Willow, please. Please, come to mom.'” The whispering and faces intensify.

Now I am holding up the line. Panic. ‘Willow. Please!’

“I am going to get my daughter now!” I raised my voice frantically.

Panic. Panic. Panic. Panic. Autism. Autism. Autism. Oh, my God, my baby has autism. I can’t breath.

It broke my heart when her grandmother asked if she had a rash because she could not sit still and kept wiggling, twisting, lifting her shirt. What do you mean? She is always like that.

“Must be the detergent,” she said. I wish.

You know the panic. You know the cold sweat. You know chaos and dread and fear.

It broke my heart when her school called and asked me to cut her food into tiny pieces because she is hoarding, storing, mouthing and not actually eating her food. But she is 3 1/2? Why do I need to do that? You know the feeling.

When you’re at the playground or jungle gym and parents wearily look at your child and keep their kids just a little bit away from yours because that child cannot be trusted. They stare at her.

What gives them the right to stare at her? I mean they are adults, God-sakes. My daughter is a child!

It’s becoming more, ‘Not-ok,’ because she is not a baby anymore. It never really was okay but now it is starting to show.

They can’t chalk it up to her being a toddler anymore. It makes me sick in a satisfying way to see it on their faces because now at least I am not alone in my experiences.

When they glance at my daughter and look away because it’s no longer cute. It’s like watching a Caterpillar in a cocoon, waiting for it to emerge no longer hiding behind her aged shell. Slowly cracking open and her little arms fluttering away.

Sometimes when I walk into our kitchen and I see her smiling and “dancing,” or as you would all know, stimming I want to beg of her:

“Please stop flapping your arms, please get off of your tippy toes, please Autism, go away! Go away! I want my daughter! I want my daughter! Let go off my girl, give her back to me!”

I want to bend her body and get rid of the sensory overload that she is on. Don’t dump those blocks on yourself! Don’t run into that wall! Don’t walk naked through the snow! Where is the brush? The cocoon? The wheelbarrow walk, OT, PT, Speech, Para where are you now? Where is my girl!

Cooper’s mom, autism parents, can you bring my girl back to me all better? Because it breaks my heart and it is crushing me.

I know you know how it is. Tell me what I need to do to not hate autism.

I wish my daughter did not have to suffer. I wish she could join a regular swim class. We celebrate autism but don’t we all wish we never go that diagnosis?

I wake in night sweats and terror.

Will she sit with a friend at lunch? Will she ever feel a boys arm wrapped lovingly around her? Will it be a safe hug? Will she know the difference?

Will she flap? Will she play on a team? Will she hate me because she will think of me as wanting to change her?

Will she resent me for all the years of therapy? Will she have abstract thoughts?

Am I allowed to talk about autism around her? Will I explain to her that she has autism? Will she keep scripting?

Will she know empathy? Will she be in a self contained classroom?

Will she need an Aide? Will she be bullied?

What about her typical little brother who doesn’t get the attention she gets and who I sometimes resent because he is 1 1/2 and jumping, pointing, requesting, opening, closing, eating and just doing everything right.

Why do you need to make your success so obvious? Why does he get to be this way and not his sister? Why did this happen to her, to me, to her brother, to us? Will he hate me?

Always from just a few months old having had to sit in on her therapy. Having to eat lunch during her session, having to stay in his room during her therapy. My having to quit pumping because my daughter could not tolerate the noise of the machine.

The stress of my daughter reducing my milk and ultimately using formula instead. Me always worrying about her. My poor sweet son, I love you so much.

I hate autism. I have to love my daughter with her autism. But I hate autism.

And the guilt. She is dancing happy.

What is wrong with me? Why can’t I just be grateful? My kids are healthy. I know I should be grateful.

She is so pretty and perfect and bothered and on edge. Rigid. Everything is a thing.

Every little step is a meltdown and the sweat is ever sitting on my neck waiting to erupt- the anxiety of choosing the wrong seat, the wrong jacket, the wrong way to the playground. From the couch to the closet.

No, please, not here. No meltdown here.

From putting socks on to walking to the door. Nothing is ever right because nothing is ever exactly the same as it was. Her standards ever changing- tolerance and threshold up and down.

Please make eye contact. Please make eye contact.

I want my baby back from before her autism.

Written by, An Anonymous Mother

The author has a Bachelors in Psychology, Masters in English and currently works for Birth to Three and as a paraprofessional at an Elementary School. Her daughter’s diagnosis has led her to her career.

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