Dear autism families, how do you spell spontaneity?

Because I love someone (1)Because I really want to know.

Sometimes I fantasize about running errands and grocery shopping. Freely, that is. I mean, without all the logistical hoop jumping that has to take place before, during and after.

Before: rustling up the courage to ask someone to either go with me on errands or come watch the family so I can go alone. Then once I’ve got a helper in tow, figuring out when, where, and how it’s going to happen. Get everyone dressed appropriately and toileted and pray that no one has a bathroom emergency before you get to the store.

 

Excuse me- 'Scuse me- Could I get a (1)

During: finding the patience to deal with the meltdowns in the store and grabbing grabbing hands before they grab another grape or cherry and plop it in their mouth.  Or, fielding the 1.2 thousand text messages you’re getting from the auties and the babysitter while calculating the difference in cost if you buy 10 pounds of cheese versus 1 pound.

 

After: Dealing with the meltdowns because everyone’s tired and stressed from running errands with you. or the stress of being left at home without you. And praying you don’t meltdown yourself. Not that it would do any good or that anyone would notice.

 

Autism parents

On a particularly faith-filled day I might fantasize about going to a movie with my husband or getting away for the weekend. But most days I don’t have the energy for that. (Not the getaway. The thinking about and hoping for it. )

Now, before you think I’m complaining, I’m really not. This is just reality. And it’s so much a part of our lives, that we’ve grown used to it. We don’t stop to think about how we can’t do anything spontaneously until someone says, “want to go to a movie?” or “Want to get away with us for a few days to the Poconos?”

"MP overlook" --Wikimedia Commons

“MP overlook” –Wikimedia Commons

Alright, I admit, we never get asked to go to the Poconos. We live in Indiana. But you get the idea, right?

“Uhm. No. Sorry. Can’t. Can’t leave the boys alone even though they’re 20 years old. Can’t leave Mama alone, either, even though she’s 80 years old (she has Alzheimer’s).”

I know, I know, our life would be so much simpler if we just put them in a home.

But would it, really?

I think it’s just exchanging one stress for another. And besides, what if we warehoused everyone who inconvenienced us?

Seriously, though, the thought has crossed my mind more than once. But the twins are still in high school and it doesn’t seem right to find them “a home” before they graduate. And Mama? Well, she gets a lot more stimulation with us (trust me on this point) than she would in a home. So she’s staying, too.

Jesse and Ellen

My son, Jesse, showing his Grandma his tattoo. It’s his daughter’s name which is also Grandma’s name, too. But she doesn’t realize that. She has her own rocking chair in the church sanctuary. Adorable!

Besides, group homes aren’t exactly a haven. Those hired to work in group homes are paid a pittance. It’s hard to attract quality people to work as a caregiver. No one is going to care as much as family.

Still, family needs a break now and then.  All parents and caregivers need respite. Time to recharge. I wish people could learn to reach out and offer to help, but everyone is so busy. Way too busy. Busy, busy, busy.

I also think people are afraid of kids with autism. They worry they won’t be able to interact with them. I admit, it is a little overwhelming sometimes. But it’s a worthwhile, important endeavor. It’s part of what makes us human.

Caring. Kindness. Love. People with autism need those things.

And so do their parents.

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