It’s About So Much More Than Fireworks

It’s not about watching the fireworks. Or seeing children run around with sparklers. It’s not about the parades. Or eating the hotdogs and potato salad.

It’s not about going camping. Because let’s be honest about how much work that really is for parents. It’s not about sitting at the beach. Or riding your bike around the neighborhood.

It’s about so much more than those activities.

It’s not about parents that are complaining about missing an event. Because I’ve heard that. I’ve read the comments from people outside the world of special needs parenting who claim parents like me are just being selfish. And lazy. That we signed up for this. And that missing one event here and there is no big deal.

But you and I who live it know that’s not true.

It’s about the isolation. It’s about missing out on the world around you.

It’s about missing out on friendships. And getting to know your neighbors and the parents at your kid’s schools. It’s even about missing out on a relationship with your spouse and family. And even watching your other children experience the world outside of your home.

It’s about never being outside of your home enjoying a beautiful day. Or sitting with a friend and talking about your children growing up. Because your son isn’t. And they don’t know what to say to you anymore. And honestly, either do you.

It’s about spending all of your time alone with a child who can’t communicate. In your house. Or if you are lucky maybe in your yard. Whether it’s winter or summer, sunny or cloudy.

It’s about secretly dreading the weekends. And even summer. Because you know you will never leave your house. Sometimes for 72 hours at a time. It’s about feeling like you are going a little crazy at times.

It’s about going to events that you just can’t miss and spending your time walking the perimeter, following behind your son, praying to God that he doesn’t wreck anything. It’s about never sitting down or having an actual conversation. Or sitting in the car with your autistic child while everyone else has fun. Because even though your child is seven, almost eight, caring for them is still like caring for a toddler.

It’s always leaving early. It’s everyone knowing that when Cooper is done, we are all done.

It’s about watching everything from afar. Close but not close enough.

It’s about watching your other child grow up through photos that are sent to you by your spouse. It’s about looking out the window and watching him bike off and wishing you could walk with. But you can’t.

It’s sending your other child with friends and family to do all of the things you wish you could do with them. But you can’t go.

It’s about sacrificing everything, even your sanity, for a vulnerable child that is solely and completely dependent on you. It’s about putting that child before your other children, and your marriage, and yourself. Because you know, they need you so much more than everyone else.

And they are your whole world too. You would never think twice about it.

It’s about going on Facebook and literally feeling nauseous and so consumed by jealousy when you see other families living life together.

It’s yelling from the front porch, ‘sorry I can’t come out,’ or sending a text saying you are unable to go, knowing that one day, the asks are going to stop coming. Because you never go. You can’t go.

It’s about no longer explaining that you are exhausted. That your child wakes up every day before 5 am, sometimes 4 am. And that you live a full day before the world wakes up.

It’s having those strained conversations with your spouse about who is going to stay back from a BBQ and watch Cooper. It’s deciding not to skip it all together. Because why should your other son miss out.

It’s always agreeing to stay back because you know your son needs you more. And that it’s just easier this way

And if you do go as a family, it’s leaving every event early. It’s packing up. It’s leaving with children screaming in the car while everyone stares. One because they are overwhelmed and one because they don’t understand why autism wrecks everything. It’s fighting with your spouse on the way home. It’s pointing the finger. It’s regretting going. It’s saying you’ll never go again. Because autism is always in our world. There are no breaks. There are not timeouts.

It’s feeling like you can’t relate to your peers anymore. It’s knowing that you are different. Because when you do get out of the house, you can’t relax. You can’t enjoy. Quite simply, you don’t know how to anymore.

It’s cringing at phrases like ‘try again next year,’ ‘who cares, it’s just fireworks,’ and ‘my kid doesn’t like parades either.’

It’s feeling so unbelievably guilty for being sad about missing out.

It’s about being angry at the world. And for a while even God. And whomever else you can throw in there. Because you can’t be mad at your child. That would make you a monster.

It’s sitting for hours by yourself, studying your child, with Thomas the Train blaring in the background, and wondering if it’s going to be like this forever.

It’s a world full of door alarms, rigidity and anxiety. It’s a world of sameness. Every day. The same. Because that’s the thing about autism that no one tells you when your child is diagnosed. It’s every second of every day for the rest of your life. There are no breaks.

It’s wondering why so many times you think you are going to go crazy.

It’s knowing that your child is happiest at home and yet you feel so suffocated at times you could scream.

But at the end of the day, it’s about loving a child so much, that you would do anything for them. And knowing that tomorrow is a new day. And that you will find the strength to do it all again.

The isolation that families of special needs children feel is very real. It’s unimaginable to anyone outside of this world.

Next time you think it’s just about watching the fireworks, a trip to the beach or a parade, know that it’s not. It’s years and years of isolation. And it’s looking at another forty or even fifty years of it.

It’s being thankful that you still have a foot in the real world and a foot in the autism world. Like I do. But knowing you clearly only belong in one.

It’s about the isolation. And accepting the forever of it all.

(Editor’s Note: All of these pictures are from two years ago. The last time we even attempted to go to a parade. It was an awful experience and we said never again.)

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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  • LISA

    July 5, 2018 at 7:49 pm
    Reply

    LOVE THIS AND SO TRUE!! YOU ARE AMAZING!!!

  • Ami

    July 7, 2018 at 6:05 pm
    Reply

    Thank you for this...For the most part, this is our life too...our son is almost 11 and sooooo many things have improved~we can go to […] Read MoreThank you for this...For the most part, this is our life too...our son is almost 11 and sooooo many things have improved~we can go to eat at certain places now, he can sit for a haircut, he can articulate to us what he needs..the heartbreaking part for me, personally, is how autism affects our other son, who is 9....he’s so protective and is always checking on his brother... Anyway~THANK YOU 😊 Read Less

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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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When my son was first diagnosed with autism no one was talking about it. Autism was hidden. I vow to change that.
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