Daddy, Play Guitar for me!

Around our house, sleep can be an elusive thing.  Monday night, both the little boys had problems going to sleep and staying asleep. BOTH of them woke up around 4 am. Many parents are "blessed" with early risers. That's one blessing I would LOVE to avoid.

Our early risers get out of bed and hit the ceiling. Where they get all that energy from I'd love to know. If ever there is a self-powered flight, it will be DEE flapping his hands as he launches over the wild blue yonder.

We're pretty lucky; my Mom is very active in the boys' lives. Summertime for the boys means movies, jet skiing, and lots and lots and lots of pool time. Grandma took the Kid Crew to the Creek on Tuesday. There are 5 kids in the Kid Crew and 3 are on the spectrum (two of which are ours). They played on the Creek for so long, and so hard, that DEE passed out in the 3rd row of Grandma's Buick and Did Not Wake for 3 hours.

He slept-walked when I moved him from Grandma's car to mine. He slept-walked from my car to the big brown coach at our house. He slept through the normal nightly routine. Hey - at 109 pounds, he's the biggest 9 year old we know. He's not chubby at all - he's dense, muscular and strong, and too heavy for this Momma to carry anymore. *sniff* That's a rite of passage, isn't it? When your baby is to big to carry. *sniff**sniff*

Smiley passed out in my car during the ride from the office to the house. Daddy carried him from the car to his bed. Smiley slept the clock around to 6 am!

We were getting ready for bed when DEE woke up. He was hungry! Of course, this boy is ALWAYS hungry. He got a big bowl of Frosted Mini Wheats. He watched an episode of Super Why on Netflix. Then he took off, running and flapping, squealing and laughing, and generally winding himself up at 9 o'clock at night.

I got him to lay down again on the big brown couch. He said he needed to relax. "What would help you relax?" I asked him. "Music," he said. (If you've ever seen the 1st episode of Super Why then you know where that response came from.)

"What kind of music would you like?" He considered it. "Daddy play guitar." "You'll have to ask him," I told DEE.

"DADDY  - WILL YOU PLAY GUITAR FOR ME?" he yelled.

~ Now, right here, as I type this conversation, you might be tempted to believe that these "circles of communication" happen all the time. NOT SO, mon ami. We usually survive on a verbal diet of Thomas the Tank Engine references. This is one of the longest conversations I've had with him. It was AMAZING!  ~

Daddy went and got out his six string, sat down, and sang the Beatles, Paul Simon, Jimmy Buffett, and other folks whose names he'd have to tell you. Sometimes, DEE nodded his head. Sometimes DEE wiggled his feet to the rhythm of the music. DEE sometimes tried to sing along; he didn't know the words but he was trying. (I nearly cried.) After about 20 minutes, Daddy looked at him, "Are relaxed enough for bed now?"

"Yeah." said DEE with a b*i*g yawn.


And we, all 4 of us,  got a full - nights - sleep.

3 Secrets of Autism

#1 - AUTISM IS AN INDIVIDUAL EXPERIENCE.
No one, I repeat, no one is living with your version of autism except you. Which means, NO ONE is an expert in your version of autism but YOU. Whether it is you, your own self, who is autistic or whether you are the parent of an autistic kiddo, like snowflakes, each experience is unique.

There's that autism saying, "If you've met one person with autism, then you know ONE person." When someone offers you advice, a friend, a teacher, a doctor, take it with a smile (even if you think it won't work for you). These people are trying to help you and /or your kiddo. Smile, believe in your heart that they want to do the best they can for you, and if it doesn't work, you've already tried it, whatever, you can ignore them.


#2 - BE ADAPTABLE.
Part of ignoring advice if you don't feel it fits with your family situation is also to adapt to what does work for your life. If your kid cannot take loud noises, then maybe you have to skip the Blue Angels Air Show. Or see if your munchkin will tolerate headphones.

Do birthday parties make you hit the ceiling? The sugary cake, the buzzing of voices, the flash of cameras make you want to go curl up in a corner and rock the stress away? Skip it!
 
Don't want to skip the party but afraid of getting into melt-down mode? Plan your exit ahead of time. Tell your host that you have another thing and can't stay too long. Having fun, no melt-downs in site? Remember that texting is a powerful tool and you can always tell your host that you received a text that changed your plans. Plan your exit ahead of time!



#3 - THERE IS NO SECRET TO AUTISM. 
What works for you to calm or soothe your overloaded nerves may not help someone else. Diet changes make work wonders for your sibling but not for you. (See #1) Your child will only eat Goldfish crackers and grapes? Then stick a package of Goldfish and a container of grapes in your travel bag and still go to out for dinner. Encourage your kid to try new things. Adapt to your life for what Works Right Now. (See #2)

You have to focus on what works for you. There are no Magic Beans. There is no Secret.

An Easy Win?

Nope. No such thing. In Autism land, every success is measured in millimeters. Every break through has taken blood (usually mine), lots of tears (both me and the boys), and the support of LOTS of Teachers, Aides, and Therapists.

And that, for me, is the killer. There is no finish line. There is no pot of gold. There is LOTS of celebrating in the moment. And then it's back to the grind. Looking to that next millimeter.

We need a different ruler. Or whiskey? Too early to get the boys drinking? I'm kidding, the whiskey is for me. The rum is for the boys.

Kidding. I'm kidding.