I Am A Parent Who Waits

I remember when I was pregnant with my son I would imagine and dream about his future. I’d think about the cute things he was going to say and do. I’d look at other children and imagine myself with my son.

I’d imagine him playing sports, making friends and playing games with me. I envisioned the conversations we’d have. I would get lost in a daydream of Jamie teaching him to catch his first fish and me running behind after his bike. I pictured myself having the kid that says the darnedest things.

And then, it didn’t happen. And I waited.

It started small at first. Barely noticeable to the outside eye.

I waited for him to sleep. I waited for him to be content. I waited for him to interact with me. I had this absolutely beautiful child who I could not figure out. So, I waited.

I remember the first big milestone we waited for was jumping. Sounds so simple right? My son couldn’t jump and a doctor told me that was a huge problem.

We worked on it every day for months. Jump. Jump, Jump. We made a game of it. Although, Cooper didn’t know we were playing.

Secretly, I was waiting for other things too. Things I couldn’t say to anyone out loud. Not my mom, not my friends, not my husband.

If I said them out loud than my fears of waiting were valid. They were real.

So, instead, I waited in private.

I waited for the special moments that other moms talked about. I waited for hugs and kisses. I waited for interactions. I waited to share moments.

I’d hear about friends bringing their toddlers to feed the ducks. I would try. It would be a disaster. I’d hear about friends sharing stories of their toddlers first this and first that. I remember smiling. I would nod. I would die a little on the inside. I was waiting. Always waiting.

I waited for him to not push away when I held him. I waited for him to sit next to me. I waited for him to play a game with me.

No one knew though. Not even my son’s dad. He didn’t know that it wasn’t supposed to be like this. He saw a busy kid. He saw a challenging baby. He didn’t know.

I did though.

So, I waited. And with each passing month I remember getting more and more anxious.

Eventually, the waiting turned into bigger things. Bigger milestones. I waited for him to start making sounds. I waited for words. I waited for him to acknowledge peers. I waited for him to play pretend. I waited for him to willingly try something like an activity or a game. I waited for him to connect with other people in our world.

With each doctors visit I would die a little at the checklists on the wall. Age 24 months…your child will be doing this.

And then, the waiting got more uncomfortable. At times it felt like all the air was leaving the room. I couldn’t hide the differences anymore.

My patience started to wear thin. I felt like I was constantly over accommodating for his delays. If  I stayed one step ahead of him the delays weren’t so visible. I told myself my son was just a bit behind his peers. If I waited, it would eventually happen. I believed that in my heart.

I was waiting. Waiting to tell the doctor. Waiting to say the words to my husband, ‘I think our son has autism.’ Waiting to make the appointment that no one wants to make.

I got to the point where I was waiting for ages, milestones, new therapies, and so on. I was waiting for it to get easier.

And then my son had autism. A diagnosis. A label. At times if felt like his future was etched in stone. And it was far different than the one I first imagined.

Before I knew it I was spending my days waiting in doctors offices and for therapy appointments to end. I was waiting on hold with insurance companies and medical providers.

I was waiting for breakthroughs and regressions. I was waiting for the ABA Therapy to work so we could eventually leave the house, play a game and ride in the car.

I was waiting for him to be healthy. And if he was healthy, I was waiting for him to be sick again. For the next ear drum burst or next bout of constipation that required surgery.

I was waiting to lose his Medicaid for the tenth time only to gain it back again.

I was waiting for other things too. Waiting for something bad to happen. Waiting for a stranger to say something mean to us. Waiting for a kid to bully Cooper.

Or, the other end of the spectrum, waiting for my 70 pound son to push someone. Or for one of his therapists to tell me he’d been violent.

I was always waiting. Waiting for the next behavior that was going to control our lives.

I was waiting for him to move past his obsession with Thomas, Elmo and Barney. I was waiting for him to stop lining things up and destroying my house.

I was waiting to let the breath out I’d been holding for years.

I felt like I was living my life waiting.

Today, my son is seven. He still hasn’t caught up. Every day is something new. Something monumental. And I am still waiting. Not so intensely though.

It’s different now. I am more comfortable with autism, the behaviors, the delays, and the waiting.

I realized I couldn’t live my life like that anymore. It was destroying me. The expectations. The waiting.

If the words come, they come. If the behaviors lessen, then thank God. I am focused on therapy and being patient. I am focused on giving Cooper his best life and figuring out what works for our family. Yes, the medical stuff creeps up now and then. Services changes. There are always phone calls to be made and emails to send. Every day is different.

But, I’m learning. Autism has changed our family. We are strong now. Some days I say we are damn near invincible. It just took years of waiting and learning to get here.

I’m not giving up either. Don’t think that for a second.

I’m just done waiting. I’ve started living. And enjoying the kid that I have.

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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.