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.

Medicine Drama - Update

DEE's been on Zoloft and the clonodine patch for a month now, and he is doing very well on both. Blessedly, we have, as a family, gotten a bit of relief from the fever pitch of DEE's existence. He can now sit down and do things. For more than three seconds at a time.

The "problem" if you will lies in the patch. We put it between his shoulder blades so that he can't reach it. Smiley, however, can. And DEE has taught Smiley to remove the patch before its week life span is up. Which means we're going through patches at a rate of 1 every 4 days. Now, one hand, I'd love to praise DEE's critical thinking abilities and problem solving skills. I'd love to praise my sons for working together in a cooperative manner.

_BUT_

This medicine is freaking expensive. And it makes a HUGE difference in DEE. Within about 4 hours, you can tell a distinct difference. So no praise.

P.S.

(In my room, behind the closed door, I celebrate this step! I promise I do!)

Medicine Drama

I know, I know. I was totally one of those people. One of those, "I'll never put my kids on drugs" people. Thinking that medicine was a cop out to "real parenting" (which is WHAT exactly, I sureashell don't friggin know!).

That Was B.D. As in Before DEE_structor. You see, DEE has a couple of twitches, or "stemms" as we like to say about folks with autism. He really likes flapping his hands; he'll be the first person to make a self-powered flight. He has some serious wrist power. The probelm with this stemm is that he may, albeit unintentionally, knock your friggin-ass out. DEE is not exactly aware of his body's relationship to space, people, cups full of chocolate milk.

And yet, that's not the stemm that makes me lose my holyeverlovin' mind. It's the noises. As in, a honking/grinding sound that reverberates in my hollow skull. As in, a high pitched sustained "whoooo-ooooooo-oooooooooop" that changes between 3 tones at a glass breaking, nerves shattering, dearheavenplease-don't-do-that-while-I'm-driving levels.

We are trying medication. First, we tried Focalin. Massive Fail. DEE is a very loving little boy, not really prone to aggressive behavior. On Focalin, he turned into the Incredible DEE-Hulk. Full of rage and showing it all the time.

So then we tried Tenex. The only effect it had on DEE was that he peed. Uncontrollably. All the time. No Tenex = no wet beds, no accidents at school, no accidents in Grandma's brand new convertible. (Seriously - he loves her car. And when he lost control of his bladder, he made an EPIC Niagra Falls potty break. No extra clothes, no towels = one mostly naked kid wearing this momma's green sweater.)

#3 - Zoloft. We are just now at the end of Week 1. The only effect so far is that DEE's noises are somewhat abated. Whether that's the medicine, or he got tired of watching his momma looseherfreakingmind, I don't know. We'll see.

As a futher side note, DEE is supposed to wear a medicine patch that delivers 1 mg per hour of clonodine. He won't even wear a Mickey Mouse or Thomas the Tank Engine band-aid when bleeding. I don't have a clue how to get him to wear a patch. Put it on him while he's sleeping? Maybe? Ideas? Thoughts? Suggestions?

Are You Kidding Me?

I spoke with a woman, Y, yesterday about scheduling an appointment with my company. Y said that things were overwhelming right now, since they had just moved up from Orlando, and her son, who is autistic and has seziures, is having problems at school.

Anyone says "Autisic" to me and I am ready to throw down and talk. So I mentioned that I too have an autistic son in school and what kind of problems is he having?

Y told me that the school he attends considers him a behavior problem and wants her to allow them to send him to jail when he acts out. *Deep breath* Say what? They want you to send your autistic son to jail? Are they out of their minds? Sending any kid to jail is a pretty darned drastic measure, if you ask me (though I will grant that there are some cases where it is totally warranted). An autistic child? Someone who can't speak clearly and always control their actions and you want to send that kid to the pressure cooker of jail.

Then Y said that her son had been off his medication for a month because she did not know who to turn to now that they have relocated. Y got my complete list of people DEE sees on a regular basis and phone numbers to boot! Hopefully, she made a bunch of calls yesterday and is on her way to helping her son have a better school experience.

As for the heifer that wants to send a kid to jail - she best be glad I don't know her name. Or I might be spending a night in jail.

The Divinity of Coincidence

I was running late, which is pretty typical of me, to take Dee to school. Fortunately, since we are going to a private, ABA therapy place – they are not as big of sticklers for punctuality as public schools. It’s my money, if I want to waste it, that’s my business.

Dee loves school. This is second year of full-on, all school day intervention. Last year, he liked school, but this year! Oh, Vive la Différence! Dee loves school. He loves his teachers. He loves to get up in the morning. He volunteers thoughts like, “Take a shower and then school.” Yes, my little love. First, we take a shower and then we can go to school. With a quick pause in between for that pesky getting dressed and eating breakfast part of the morning.

Back to the part about me being late (again). There was another mother who was also running late. She called out to me as I was about to get into my ‘Burb. “Hi. You probably don’t remember me but we met at SE’s wedding a few years back.” I remembered her. Of course, I remembered her. We had a really great time talking about babies, with my impending birth to Dee fairly evident, and her fairly new baby boy in her arms. I did not remember her name, that would have been too awesome if I had, but I remembered the name of her son, M.

So we stood outside the school and had a nice chat. About the school. About the boys. About the program that Dee is in. It turns out that her son, M, has been in class with Dee’s teacher’s daughter, Lulu. Lulu and M have been buddies from the get go apparently and they play together in the afterschool program too. My newly rediscovered friend, T, told me to let her know if Dee joined the after school program so M could “protect him, too.”

T & M spend a good bit of time talking about people and people’s differences. She said, “If one person has trouble playing soccer, then you help that person. You help him to become a better soccer player. And you remind him of the thing that he does do well.” It’s a really important part of her life lessons to M. She grabbed her cell phone and gave me her phone number with a stern admonishment to call her if we need help picking up Dee or if we wanted to hang out while we were in her area of Lower Alabama.

And then we hit the cars and drove our separate ways. I sat in my ‘Burb for a long minute. Here was a woman I’d met almost 7 years ago, for one evening, who out of the blue stopped me and offered her help, or her ears, for whatever kind of support I needed. What I needed was to remember that I am not alone on my journey with Dee. Not even just supported by my family, but by people who are willing to listen.

“Coincidence is when God chooses to remain anonymous” – He’s only anonymous if you forget to thank Him.

Thank you, Lord. Thank you very much.