The Parts I Wasn’t Prepared For…

When my son was diagnosed with autism at age three, I was initially devastated. I think that’s normal for a parent. The word was big and scary. It made me feel out of control. It made me feel helpless. I knew nothing about autism. Or where to begin. Or even what the future held.

I felt that way for at least a year.

But once the dust settled, I dove in. My kid was awesome. He was adorable and smart. He just needed more time. More help. Autism didn’t change him. It was who he was.

In a way I felt motivated. I educated myself. I built the best village around him that I could. I found the best services. I found what worked for him. I was going to give him his best life ever.

I quite literally made his autism my life. That’s what parents do.

But in doing all that, giving 100%, I convinced myself that this would all eventually be fine. He’d grow up. Get better. It would eventually get easier. Of course he’d still be autistic, but he would improve. Even if it was slowly, he would still improve.

Once we got all of the resources, people and services in place, it would be easier.

Autism couldn’t be hard forever. I believed that. I was an eternal optimist.

And I could do anything for a while.

I believed that some day he’d learn self care. He’d learn how to shower. And get a snack. And tie his shoes. He’d learn how to read. How to safely cross the street. He’d start communicating with me. The behaviors would lessen. The meltdowns and screaming would go away.

With age. With time. With hard work. It would get better.

That’s what life is…a progression.

We all know beginnings are hard. But kids grow up. They need you less. They learn to help themselves. They develop hobbies. Make friends. Learn independence. They eventually move out. They fly the nest.

Now I’m a realist. I knew some of those things wouldn’t happen.

But I was working towards easier. If I just did enough I could make our future easier.

As I sat yesterday in my living room, reading Facebook comments and nursing my newborn baby, I stumbled across one that felt like a punch in the gut.

It read, ‘Quit complaining. You got pregnant. You should have been prepared for this. That’s the risk you take when you have a baby.’ This woman was referring to autism. She was referring to my son. And life long care.

I let her comment sink in for a minute. Comments like these ones always sting. I snooped on the commenters Facebook page. No sign of children. No sign of special needs. That is pretty typical. The biggest critics have no idea.

I shook my head and thought back to eight years ago. Pregnant with Cooper. I was young. I was naive. Happily married and starting a family. I was blissfully unaware that anything other than a perfectly developing child could happen.

I found myself thinking about all the parts that I wasn’t prepared for…

Autism

When I was pregnant, I wasn’t prepared to have an autistic child. I always admit my truth on this page. I didn’t even know autism was a thing. It was not a common word. It wasn’t discussed in mainstream media. It was a ‘thing’ that happened to other people’s children.

I don’t believe anyone plans to have a child with special needs. Why would they?

Personally, I didn’t know that some children never learn to speak. Or grow up cognitively. I simply didn’t know. No one told me to be prepared for it. Or that there was even a risk. I did everything right. I took my prenatal vitamins. I didn’t drink or smoke. I had excellent medical care. I ate well. I exercised. I prayed.

Even when I started to realize he was delayed. He wasn’t talking or meeting milestones. I still didn’t know. I wasn’t prepared mentally or emotionally for autism.

Helpless

I wasn’t prepared to feel quite so helpless all the time. My son has a neurological disorder that I can’t fix. I don’t always understand it. I don’t always know what to do. Or have the answers. I joke that my autism instruction manual got lost in the mail.

I am often helpless, just doing the best that I can. Daily I am reminded that I can’t make my baby talk. Or make him aware. Or make him understand our world. I am quite literally helpless. All I can do is keep his well being at the center of every decision I make.

Roller Coaster

I wasn’t prepared for the roller coaster of emotion. How for months I can be fine. I can focus on the positive, the immense joy this boy brings to our lives, and the beauty in autism, only to plummet on a moments notice.

Maybe I see a seven year old boy. Or maybe it’s after a meltdown so fierce. Or an outing gone wrong. It doesn’t matter really.

In an instant I will be back to square one on the grief path. I wasn’t prepared for that. I thought and assumed healing was linear. That every day it gets a little better. It does not. It’s exhausting. The starting over all the time.

Unprepared

I wasn’t prepared to feel so unprepared. Having a child with special needs often feels like a test I didn’t study for. I’m not a teacher or a doctor. A therapist or a psychologist. Autism is a mystery to me.

I don’t have the answers when people ask if he is going to talk. Or where he is going to live when he grows up. I don’t know what the future holds. I wasn’t prepared to discuss Medicaid or long-term care. Or to be an advocate.

As someone who always studies for the test and prepares, I wasn’t prepared to be so unprepared all the time.

I didn’t know the immense pressure I would feel to be the sole advocate for a disabled child. Or to have all the right answers. All the time.

Intensity

I wasn’t prepared for the intensity of my son’s needs or behaviors. When he screams at me. Or demands that the lights be shut off. Or if the WiFi stops working. The intensity is indescribable. I wasn’t prepared for that. I wasn’t prepared to have a child that I can’t reason with. A child that doesn’t make sense all the time.

My nerves are shot. My patience, which is quite literally amazing, is often tested. I will feel like an open nerve at times.

I wasn’t prepared that I would have to be ‘on’ all the time. At any given time my son is putting a quarter in his mouth, trying to escape out the front door, stripping a bed, stealing photos out of frames or even grabbing a knife to open something. Every moment feels so intense all the time.

There is no down time. No breaks. It is always intense.

Being Left Behind

I wasn’t prepared for the world to leave us behind. My son is growing. I know that. But in so many ways he is still the same toddler he was at age two. Barney, Thomas the train and Elmo are staples in our home. School pictures stopped in kindergarten. He is no longer in a grade. No sports. No play dates. No birthday party invites. We don’t have typical milestones. Every day, month and even year feels the same. The only thing changing seems to be his clothing size.

I often look around and see the world changing. My friend’s kids are growing up. My other children are too. And Cooper and I feel frozen in time.

Forever

Lastly, the hardest one, I wasn’t prepared for the forever. I have always believed that with hard work and perseverance we overcome. That eventually, it will get easier.

Autism hasn’t gotten easier. Not yet anyways.

A year or so ago we met with a social worker. He said to me, ‘your son has one of the most severe cases of autism I have ever seen. There is no way you can do this forever.’

I will never, ever, forget that moment. The words hung in the air between us.

I remember thinking…‘FOREVER? This can’t be forever. This man is crazy. This will eventually get better.’

I wasn’t prepared for forever. I can’t change this. And it’s never going away. And while I will forever choose to see the beauty, that doesn’t make it sting any less.

Lately, so many parts are hitting me hard. Maybe it’s because his birthday is coming up. Age eight. He’s not little anymore. The seriousness of this is looming. Autism isn’t going away. The future I was so nervous about is now our reality.

The reality of that still takes my breath away.

Written by, Finding Cooper’s Voice

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Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook and subscribe to our newsletter.