Her Spinning

I told her tonight that if she wanted to cuddle she would have to stop her wiggling and squirming. She was hiding underneath the blanket by my toes: giggling.

Total sensory overload.

She crawled out and laughed and flapped and I told her again. Things need to be structured to go smoothly.

She wrapped her arms around me reluctantly avoiding too much touch and squeezed gently. The whole process so uncomfortable for her.

“One, two, three, four…” We started together and then her counting became as always rapid and just before thirteen she let go.

My girl can count to thirteen. And she hugged me up to thirteen seconds even if she cheated a bit.

Up until a year ago we didn’t know if she would ever speak. You know I am lucky and this is our new normal.

I know that for my former friends and for my parents or for the parents of typical children all of this makes them uncomfortable. All these little things or huge things that we do and we barely even notice anymore.

Two years it would destroy me that she didn’t seek out affection that she pushed away from hugs or kisses. Or her hiding from light and noise, or her spinning or wandering. Her autism.

It’s funny how you go from crying every night. Literally mourning and having that killer pain in your gut to being grateful and adjusting to your child.

My husband used to find me like that. I couldn’t get over her diagnosis.

Don’t get me wrong. I, of course, still cry a lot and it gets me unexpectedly and it still hurts like hell but Life still goes on. If I want a hug I have to ask for it.

Use incentives and count her through it. You get used to the therapists sitting on your kitchen floor while you’re cooking spaghetti. And if my child is climbing on the walls I tell her to do a snake walk across the carpet.

She shows off her bunny hops or bear walk. Not ever knowing that I’m getting her body to calm.

Yes, I make her wear a bag pack or carry out heavy groceries to the car. In the summer I throw her in the pool for half and hour and she comes out being able to direct her speech rather than just scripting or talking to a wall.

This is our new normal and I did not realize until this weekend that I barely notice it anymore.

I hadn’t had the courage to venture out much since our last failed playdate but she was invited to her first birthday party ever this weekend and I, of course, was on the verge of tears the whole time. You know why.

My girl at a birthday party. I was nervous and delighted to see that she interacted with a peer from her class and that this sweet boy called her name to play.

Honestly, this birthday party was the happiest thing that has happened to me and my husband this entire year. And when I was there I really could not believe it. This child wanting to play with my child and her engaging with minimal prompts from me.

I let her go and watched from a distance.

I kept that frantic lookout for her when I bumped into another mom. She seemed scattered, nervous. She seemed like me.

I asked her if her son wandered and ran too.

She smiled nervously. A broken smile that I recognized straight away: “Oh yes, all the time.” We shared how we both used to use a type of harness to keep our children attached to us.

I talked to the parents of the typical child my daughter was playing with. Their ease and chill was contagious and I noticed how differently we approached our kids.

All of our children were climbing up a rope ladder to the top of the playground. I didn’t interfere and watched my daughter struggle.

I noticed that the special needs parents stood back and watched their children encouraging them:

“You can do it! Use your arms! Now pull yourself up! You got this. Oh buddy, I know. You can do it!

And that the parents of the typical peers gave their kids a push or held their hands and seemed much more anxious about them falling. They physically helped their kids up. I thought about that.

Our minds and hearts want so much for our children to be independent. Every situation is a learning opportunity.

We never stop redirecting, we never stop prompting and anticipating. We are always on high alert.

We all know the startling gut wrenching smack across the face that can come from a tantrum at any given time, or a heart breaking comment from a stranger, or being asked to leave with our children.

We know our kids fall every single day. We know they can’t tie their shoes, or they struggle carrying a lunch tray.

We know they want to use their hands or just skip music class because it is too loud. But we don’t stop helping them learn to become independent, to problem solve.

We adjust. Having a child with a disability and everything that comes with it just kind of becomes your new normal.

You use a token board for handwashing. You carry incentives in your purse just in case. You park extra close.

First this then that. First clean up then…It’s like we are constantly trying to help our kids learn the skills they need but we are living based on them: we meet them halfway. We change for them.

If I had told myself about this a year ago it would’ve made me sick and cry and run. I never wanted to admit autism or accept autism.

I much preferred minimizing autism. But the thing is, is that the me from a year ago and the me from now love my daughter all the same. I loved her then and I love her now the exact same way.

A year ago I couldn’t tolerate my daughter spinning. I asked her therapists why she did that and if they could make it stop. I didn’t get it and most importantly despite knowing, I did not want to get it.

I wanted them to fix her.

I will share with you now the most beautiful thing I saw this weekend. Perhaps one of the most beautiful things I have ever seen.

The most beautiful thing I realized about myself—two years after her diagnosis. And I hope that you can have this moment too someday. I hope I don’t forget it the next time the sadness hits.

Soon after the birthday song was over and right after she licked the last of the icing off of her cupcake my daughter jumped away and ran splat center into a big grassy field. Everyone was watching. Her friend followed her.

She ran there to that field and began to spin. Her arms were out and she was spinning. Self regulating. Spinning, spinning, spinning.

Her neurotypical friend smiled and began to spin too. My daughter noticed him! And together they spun around and around giggling!

My heart stopped racing. I smiled and they giggled away. I was truly happy.

It’s going to be okay. She has autism. But you’re going to be okay.

She is going to be okay with her autism and you are too. You will make it work. I wish I told myself that two years ago.

Written by, Wendy Wyler

Wendy has a MFA in Creative Writing, a Bachelor in Psychology and has a girl and boy on the spectrum. She works for Birth to Three and as a paraprofessional in the school system.

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