I used to Say I was Broken

I don’t think I will ever be able to put into words how hard autism hit me.

And I don’t mean the word. Or the years up to getting the diagnosis.

Yes, that was all hard. There is no doubt about that.

The realizing something was off.

The no sleep. Struggles to get him to eat. Or play. Or be content. Or go anywhere. Or acknowledge people.

Well-child visits to the doctor where I could see milestones slipping away.

The realization he was nothing like other kids his age. Or even younger kids.

The day our daycare provider pulled me aside and said, ‘Some kids never learn to talk, ride a bike or even make a friend.’

Making the appointment to get him diagnosed and saying to the man on the phone…’I’m pretty sure we won’t actually have to come to this. He’ll be fine by then.’

Going, hearing the words and getting the label.

The speech therapist who said, ‘You need to understand that Cooper might never speak.’

Moving multiple times for better services. Moving to help Cooper.

Diving so deep into autism and losing myself.

All of that. All of that did some damage. I don’t know how it couldn’t.

But all of that was done by age 4.

By then we had the diagnosis. I read the books and the blogs. He was getting multiple therapies and services.

We should have been fine.

I should have been fine.

But I wasn’t. Our family wasn’t.

People assume the hard part is getting the diagnosis. It wasn’t.

It was the day-to-day that broke us.

The screaming. The kicking and hitting. The never sleeping. The 3 AM wakeups. The diaper changes. The never being able to leave the house. Losing friends. Losing touch with reality.

Watching Cooper’s brother accept that a relationship wasn’t going to happen.

Watching him say his first words, make a friend and learn to ride a bike. And grow up. All while his older brother was locked away in his own world.

It was no communication. No hugs.

It was not being able to reach my baby. No matter what I did.

It was never hearing mom or I love you.

But most of all it was looking at the rest of my life knowing that I would be providing lifelong care to my son. There would be no college graduation, wedding, or grandbabies.

It was accepting forever. But also a mysterious forever. Would he be potty trained? Would I be bathing him? Would we be getting a babysitter when he is 30 and 40? And what would retirement look like for us?

It was wondering how I would care for him as I got older. It was the worry of keeping him safe from a cruel world.

The weight of that was firmly on my back.

Somewhere around age 5 I broke.

I couldn’t help my son. No matter what I did.

I wasn’t depressed. I want to be clear on that.

I had a great job that I loved. I put on makeup, exercised, and had friends.

I loved my kids. I smiled. I laughed. I enjoyed my life.

But I felt like a robot in a way. A robot that lived in hard.

If asked by a close friend or family, someone I trusted, I would say that my heart may never recover from severe autism. From having a little boy that will never grow up cognitively. Or speak to me.

Never hearing mom. Knowing I will die one day and that he won’t understand. And that he will wait for me at the door saying ‘I want mom’ with his speech device.

I would say I was broken. My heart. Cracked right down the middle. And I meant it.

It’s been years since then.

I’m doing better.

I don’t feel broken anymore. At least not so jaggedly.

Severe autism is still our reality. We still live in a world of nonverbal, anxiety and ADHD. But the beautiful parts have emerged.

It’s like we can stand still now. We can breathe.

I’ve grown. Our whole family has.

Last night a follower made a beautiful comment on one of my photos. And it summed up how I feel entirely.

‘This family has a lot of love for each other. It’s like they loved all the pain away.’

I couldn’t have said it better myself.

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