We Aren’t Excluded but we Aren’t Exactly Included Either

I was talking with a friend the other day.

I was telling her how summers can be so hard on our family.

In a way, part of me actually dreads them.

Our friends, family and neighbors are so busy. We hear about it. We see it on Facebook. Pictures. Stories.

They are traveling to Disney. Going to summer festivals. Grabbing candy at parades.

Attending baseball games. Going for bike rides. Visiting the latest waterpark.

On Facebook it seems so effortless. And while I know that everyone has struggles, I’m not blind to that, I know that most don’t have ours.

We can’t go places. I could go into all the reasons why, but it’s pretty simple. We know our limits.

We don’t whine about them. We don’t dwell. But we do feel the strains of them.

I told this friend over our second glass of wine how we have obligations coming up.

Camping trips. Family reunions. Fireworks. Barbeques.

And how Jamie and I fight about it. We don’t want too. We adamantly try not too.

I mean, we are on year 8 of this. We know it all too well.

But when it comes down to it, and you have to say no to an invite, it stings. Or when the invites stop coming. That hurts too.

And it puts a very unique pressure on a marriage. One that we’ve gotten used too.

How do we make people happy, enjoy our lives, and give each of our boys what they need to be happy?

We don’t necessarily have the answer yet.

But we’ve learned to make accommodations. Get creative. We balance. We do a dance of sorts.

We stay at hotels while others camp. We host every chance we get.

We split up. Jamie goes to the party with Sawyer and Harbor and I stay home with Cooper. Or vice versa.

One of us stays in the car. We live through photos of the other one having fun.

We hire people to help us.

And some days, it just plain old sucks when cousins and friends do things…and Cooper can’t go. Even though I know in my heart he can’t go…but come on. You couldn’t accommodate the plans just once so he COULD go?

She listened for a while and said, ‘it sounds like you are being excluded.’

I thought about that for a second.

Were we?

Five years ago I maybe would have said yes.

But the answer is no.

We are not excluded. But in a funny twist, we aren’t exactly included either.

And the reality is…it’s not really anyone’s fault.

That’s an important life lesson that took me years to learn, understand and accept.

There is a place in between being excluded and included. And most special needs families live there.

People can’t change their plans for us. We can’t always host. It is what it is.

And we don’t always want to leave Cooper behind. It’s as simple as that. We are a family.

Our son has special needs. Therefore our family has special needs.

He can’t handle crowds. Or new places. He doesn’t understand danger. He won’t sit still. He can’t wait in line. He doesn’t like loud noises.

So. We stay home.

Or we split up.

And yes, we continue to try new things too. We push our son out of his comfort zone. We find new babysitters. Use grandparents as much as we can.

But when it comes down to it, we typically stay home. We’ve adapted. We’ve made our home our fun place. It’s just easier that way.

And sometimes, after the kids have gone to bed, Jamie and I have conversations about doing this forever. We wonder if it will get better.

Or will we be living in this ‘in-between’ place forever. Getting babysitters when he’s 20 and 30? We just don’t know.

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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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