A Foot in Two Very Different Worlds

Last week, my five-year-old son Sawyer spent four days with his grandparents and his cousin. They fished, swam, biked and lived the cabin life. I was so excited for him to go and have fun. One of my worries and honestly, very real realities, is that he misses out on things.

Having a sibling with special needs can do that. There is no sugar coating it. As parents to our children, we kill ourselves, and stretch ourselves way too thin, to make sure our children are getting what they need. For one that may mean socialization. For the other it may mean rarely leaving the safety of your home. It’s up to us to find a balance that works. And often, if you are like me, that means a foot in two very different worlds.

The truth is, Sawyer often misses out on events. Or has to leave early. Or gets one parent.

You should see his face when both Jamie and I take him somewhere. It’s pretty special.

I’m starting to realize that as both my boys grow, their needs are getting far more drastic from each other. So any time that Sawyer can somewhere special alone, I jump at it. I want him to have his time.

This also means that for the four days he was with Grandma, Jamie and I got to slow down and really focus on Cooper. There was no pulling us in different directions. No splitting time between boys. No guilt about anything.

There was just my first born. My silly Super Cooper.

I immediately noticed how much easier life could be when I just have him to focus on.

I was able to take the time needed to get him dressed. And negotiate about dinner and how many drinks to take. I could study every single one of his treasures and smile as he beamed with pride over his favorite photos. I could sit with him and watch Barney and dance with him every single time he requested.

I was able to work on our goals with headphones and timers. Take the time for him to put his shoes on himself. I could grab five minutes here and there to have him spell words on his speech device.

It was easy to walk to the park and keep a hand on him. I had nothing else to worry about.

For four days, his safety and quirks, were my only worry. Nothing conflicted with it.

I was a mom of one autistic child for a few days. I had forgotten what that was like.

I immediately noticed how happy Cooper was too. Not that he doesn’t love his brother but who doesn’t want all of the attention? Let’s be honest.

We were able to take Cooper for a boat ride and do the things he loves to do. Like stare at trains for hours. And go fast. We didn’t have to worry about requests from Sawyer for fishing or to bring a friend. It was just simple.

There was no fighting in the car. No fighting at all.

Another night we took Cooper to Target. We haven’t taken him to a store in over a year. This is also something we could never do with both boys. Not yet anyways. We remembered how fast mommy and daddy can get groceries when we tag team. Coops rode in the cart (he’s not comfortable with Caroline’s Cart) and wouldn’t let me get more than six inches away from him at anytime. He narrated our whole trip with sounds, extremely loud ssshhhing, laughter and pointing. If you were within a ten mile radius I’m sure you heard us. He was most excited by the chairs. Go figure!

He also hustled us for two Daniel Tiger DVDs. And I don’t mind in the slightest. I can count on one hand the number of things this kid has asked us for. Buying him something is pretty special for us.

We took him out for ice cream. No requests to go into Dairy Queen. We moved at his pace. We accommodated his every need.

I didn’t have to figure out how to manage his care during Sawyer’s t-ball games or even figure out how to keep the doors unlocked so Sawyer could go in and out with his friends. It was just easy.

It was delightful. It was different. But good God did I miss Sawyer. My bubbly, non stop talking and moving, son.

I immediately remembered what the silence was like. No non-stop questions from Sawyer. Car rides weren’t filled with chatter about dinosaurs or rocks. Besides Cooper’s grunts and squeals and my questions, they were silent. For a brief moment I let myself think about how it’s been silent for seven years. And then I pulled myself back.

Sawyer came home on Wednesday full of stories of all the fish he caught and candy he ate. It was back to reality. I immediately took him to soccer after work.

I brought my chair and parked myself in front of the game like all of the other parents. I watched Sawyer run, play, interact, laugh and smile and wave at me. My heart was full.

As I sat there I thought about how I live in two different worlds. I wear two hats.

How for four days I lived autism and solely autism. Now I was back to having a foot in both worlds.

One with Cooper. One with Sawyer.

One with autism. One typical.

I feel spread between. Split down the middle. And while they are both my sons, barely two years apart, there is almost no crossover in parenting them.

One has anxiety and rigidity. One without.

One has complex medical needs and I say his birth date more than I say my own. One goes to the doctor once a year for his well-child visit.

With one it feels like everything is a fight. A fight for inclusion. A fight to be seen and heard. A fight to be accepted. A fight to wear shorts and eat an apple and sit at the table.

With the other, I watch him seamlessly make friends. I listen to him talk and speak up whenever he needs something. It almost feels like at age five he is going on twenty. Some days it feels like he doesn’t need me anymore.

Cooper only wants to be home. Sawyer craves socializing and the outside world.

With one I spend my time at home, keeping him safe, guessing what he needs, and praying that he is happy. I use ABA methods. We communicate with a speech device. We celebrate every victory, no matter how small.

We watch the same shows we have since his birth. We laugh at sounds. I call it a secret world.

With the other one his loves and hates are always changing. Constant new interests. One week it’s Pokemon and the next it’s hockey. We talk about kindergarten. And school shopping.

We go to soccer, parks and t-ball. I socialize. I talk with other parents about every day things. I am a normal mom who knows nothing of autism. Or having a kiddo with an unknown future.

When I’m with one I miss the other. I still haven’t figured out how to be with both at the same time.

I feel pressure to be in Cooper’s world all the time. To be 100% immersed in autism. There are days where it consumes me.

And I feel the desire to be with Sawyer just as much. To go for walks. To visit zoos and go to the movies. He wants to experience the world and I want to be there every step of the way. I hate observing through a window or through pictures. I want to be there too.

But the truth is, and it’s a very hard truth to accept, maybe even the hardest for me…I have a foot in two different worlds. I feel torn. I feel like I often have to choose. I always feel like I am missing out. And the reality is, Cooper needs me more.

With another baby on the way, I wonder if I will be split again. If this baby will be like Sawyer. Or Cooper. Or someone new altogether. If he will be able to live a life outside of our home. Or not.

Only time will tell I course. I live with a foot in two very different worlds. One that most people have no idea even exists.

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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.

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  • autismwithgrace

    August 9, 2018 at 8:14 am
    Reply

    I totally understand. When I had my older 2 kids at home my younger child with autism needs always came first. It was tough on […] Read MoreI totally understand. When I had my older 2 kids at home my younger child with autism needs always came first. It was tough on my older child. I was a single mom so I had to rely on my parents to help. They are now 24 and 21. I am now remarried and have a daughter that is 8 with moderate level autism, It is much easier when you have just one child to focus on. No guilt. Read Less

  • Merle W.

    August 9, 2018 at 4:06 pm
    Reply

    I am thankful I discovered Cooper and his family this week. Your boys are precious!

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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 my page!

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