A Morning in the Life of a Girl with Autism

Most mornings she wakes up around 6am.

She enters the playroom and turns on all the lights. She turns them all back off. She turns them all back on.

Then she comes to my room. The door is locked with a keypad.

She enters 4 numbers. I don’t know which 4 numbers because I’m on the other side of the door.

She enters the same 4 numbers again. I know because the pitch of the numbers is the same. And again.

Then she knocks. 4 times. Bang, bang, bang, bang. Then again.

This all takes 15 seconds.  I open the door.

I say good morning and I tell her to use the restroom.

Sometimes she listens the first time. Sometimes she doesn’t.

She fills up the bathtub in my bathroom all the way to the top – all hot water, no cold water to lower the temperature.  It doesn’t matter how many times I try to teach her. She only wants hot water.

I could insist, but she’ll scream and it’s not a battle I’m willing to fight at 6am.

The morning moves on like most. Clothes, breakfast, make lunch, shoes, backpack, then get in the car.

Depending on the day she gets in the grey van with me or the red truck with dad. It better be the one she’s thinking of this morning because no one will be happy if it’s not.

She has a plan. No one knows the plan except her. There are schedules. There are calendars.

She knows what day it is. She doesn’t care. She has a plan.

This is how most mornings begin.

Other mornings don’t begin as well. They begin closer to 3am or 1am on a really bad day.

I think back to when she was 3 years old and the doctor said, “does she have trouble sleeping or does she have a decreased need for sleep?” I think, “Oh God, please let it be the first one, because I most definitely have a need for sleep.”

It’s Monday so we head to OT.

She starts with squeezes and joint compressions. This helps her focus and get started.

She practices handwriting. She can copy everything that is put in front of her.

A stranger could look at her handwriting and think it looks as legible as any 7 year old’s. She’s 11. That’s ok, though.

She’s behind, but she’s progressing, at least in this area.

The lessons usually go well unless she makes a mistake. She has to erase and then rewrite and then erase again.

If it doesn’t go according to her plan, it’s over. She can write any words she is asked to write, but she can’t write any words of her own.

She can’t write a story about what she got for Christmas. She can’t write a letter to her friend to be folded up into a little envelope.

She can’t tell anyone what she is thinking or feeling. She can’t. Or she can’t yet? I really don’t know.

I desperately want to believe it’s the second one, but we’ve been at this every day for 11 years and the words still aren’t coming.

Once handwriting is done, she works on tying her shoes. It’s a different method but she’s getting it. I’m proud of her.

She gets her yellow gumball that she’s been working for. She’s happy. Then she comes out into the waiting room and her therapist talks to me for a few minutes.

All is well until something happens. I don’t anticipate it this time so I can’t stop it.

A baby screams and then she’s gone. She’s flopped on the ground and she’s screaming.

She’s pounding her head with her own hands and saying something no one understands. I grab her. I squeeze her.

I put my hand between her hand and her head and I squeeze, thinking that if I can gently give her the input she needs in her head, it will help.

Everyone is staring  I honestly don’t care. She eventually stops.

I look at her forehead and her wrists. They both have red marks. Depending on how hard she hit herself this time, those marks may or may not turn into bruises.

We stand up and go to leave.

A well meaning mom stops and says, “I hope your day gets better.” I say, “thank you”, but think to myself, “This isn’t a bad day. It’s Monday.”

We head to Chick Fil A to grab an 8 count box of chicken nuggets with one ketchup.

She wants fries but we’ll have to wait 10 minutes because they don’t have fries ready at 9am.

I tell her we can’t have fries. Most days she’s ok with this.

Some days it leads to kicking the windows and the roof of the car.

We press on because this is a battle I have chosen to fight and, by God, I’m going to be consistent about something.

We head to ABA therapy. It’s a 20 minute drive, but it’s worth it because we’ve been to several sub-par therapy clinics and this one is the best.

We walk into the lobby. She rings the bell.

Her therapist comes out and I fill her in on the night before and the morning so far.

We say goodbye and I head out the door to my car.

I sit down and I breathe. I feel relief that for 5 hours I get to do something different. Then I immediately feel guilt. 

Guilt that she’s not doing as well as she should be.

Guilt that I even think this is hard.

It’s not supposed to be about me. It’s about her. And this is so damn hard for her.

I check my phone. I look at what the rest of the world is doing.

I want a connection to both the people who live in this world with us and those who don’t.

I want to tell them about her so that they’ll understand. I want her to be included.

I want to remind myself that everyone has something hard in their lives. Everyone struggles. I know that they do, but I wonder how many really struggle like this.

The morning is over and it’s time to work. I put down my phone and I drive away.

Written by, Amy Hamand

Amy Hamand is a wife and mom to 3 girls.  She lives outside of Austin, Texas and works for a local non-profit organization that provides funding for autism therapy.

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