I Don’t Want to do this Anymore

I don’t want to do this anymore. 

Is it okay to say that? 

Probably not unless I am talking to another special needs parent. 

But it’s ten weeks into summer and I am counting down, 16 days until school starts. I’ve actually been counting down since the day before school let out. 

We’re in the home stretch now. 16 days until my sanity can slowly return over the weeks it takes our kids to transition back into their routines. Like the settling of a storm, we will put our lives back together as the casualties of summer find their way ashore. Back to reality.

Most families spend the year counting down the days until summer vacation. Days where they can sleep in, go on family excursions, and endure that time of year that fosters togetherness and fun. 

But most of us with kiddos on the spectrum do the opposite, we count down the days until summer is over because our lives are turned upside down and inside out.

This has probably been one of the hardest pills to swallow—going from someone who loved summer and vacations to someone who craves an eternal loop of Fall. I could live September thru December all year long, over and over again and keep my sanity.  

I never though I’d be someone who goes into full-blown panic mode come May. Someone who gets overwhelmed by anxiety and fear of the unknown. 

Fear of how we are going to make it out alive after three months of our kid’s unstructured free-time. Trying to balance work and home during these months.

Twelve weeks of meltdowns and total chaos when it should be filled with laughter and fun. 

But we get good days and bad days.

Short trips with ice cream cones if you wait in line to go on rides. Prizes for being good at a BBQ. We have to reward our kids with extra rewards when the experience we want them to behave for should be the reward itself.

But this is our life. 

I’d love to take my kids on a boat to explore the open ocean or go rafting down a stream but they would never go for it. They’d never enter the water. Instead they would scream and cry and want to be at home in their rooms on an iPad or an Xbox, where they know what to expect. Because that’s what it’s all about. 

My kids need to know what to expect which is also funny considering as parents, we never know what to expect when it comes to their reactions to new experiences. 

There are days throughout the summer that we enjoy, don’t get me wrong.

We visit the beach, we BBQ, we go on little adventures. Sometimes it goes well and sometimes it doesn’t. It’s like flipping a coin.

Those two weeks before Extended School Year Starts and the week after it ends are usually okay.

It’s once they realize it is not just some long weekend is when they begin to fall apart. When there is no routine to follow, no consistent social settings for them to be a part of, and the redundancy of being home everyday in and out with babysitters. 

Sending them to day-camp for the summer would be ideal if such a place existed within a commutable radius of my home and place of work. One that also covered the entire work day. And it seems anything remotely doable runs parallel to the ESY calendar. Isn’t that ironic?

It’s August that is the hardest.  August is when our whole family falls apart.

For us, summer means splitting up vacation weeks to watch the kids separately this month and paying babysitters throughout the rest. It’s a time when we cut down on therapy when they need it more than ever but it’s just not reasonable to pay for therapy and babysitters at the same time. 

After surviving this summer, I look into the future and fear this can’t be it. This can’t be our eternal existence for the next decade. I can’t spend over $6,000 per summer on childcare while my kids spend their summer rotting at home alone with babysitters. It just feels wrong. 

I feel like I just can’t do it anymore. And that I don’t want to do this anymore. I want to enjoy summer and take a family vacation from this life. I want to take a week off to be alone. Or alone with my husband. Or just alone.

In 16 days, I’ll probably miss them and write about it.

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