From special needs kid to manhood

There are events and moments that mark stages of life. Today, Joey achieved a big one.

No, not a prom or a date. Certainly not engagement or marriage.

Nor was it the first day on a job.

And it dang sure wasn’t getting behind the wheel of a car.

No, today Joey came home and…

Signed his 1040-EZ for the Internal Revenue Service!IMG_20140128_183914_620

Sure, I filled it out. Melissa and I have complicated taxes and use a pro to prepare them. But Joey is a breeze, and the site offered by H & R Block was easy, fast and free. Still, I felt that Joey ought to sign for himself.

The day of assembling tax info went well. I was in a grateful mood. All kinds of people paying all kinds of taxes provide resources that help a special needs life and support those who provide the day to day care.

I made it a bit of a spiritual undertaking, leaning on a New Testament passage that isn’t preached all that often,

Pay to all what is owed to them: taxes to whom taxes are owed, revenue to whom revenue is owed, respect to whom respect is owed, honor to whom honor is owed. (Romans 13:7)

So we’re thankful tonight, for all of you taxpayers out there who have helped our lives in many ways. We honor you and we pay our taxes without grumbling.

And we’re thankful for Joey, who opens us up day in and and day out to see deeper content in all the chores. Even doing the taxes.

No use cryin’ over…

Well, the milk’s not really spilled. It’s just gone.

As mentioned last time, we’re eating healthier and I’m preparing good meals to have at the ready. Today was to be a low fat, low carb egg bake. The recipe called for some skim milk.

So, I’m up at zero dark thirty making the thing. I’m ready to add the milk.

IMG_20140121_121501_383Here’s what I found >>>

The autistic kid gets up at night to get a drink. That’s not autism – that’s just human. Autism is gunning down the whole quart of milk. Autism is not having the social grace of, say, a typical teenager, who would at least leave a tablespoon or two in the bottom of the jug and say, “Hey, I didn’t drink it all.”

Happy ending: I realized I had some fat free cottage cheese and I used that instead of the milk. It worked just fine.

So I guess I should be glad that autism teaches care givers to adapt and improvise.

The Leftovers Monte Cristo Option

Melissa and I are eating healthy after the holidays, a family wedding and assorted other ventures into overindulgence.

Saturday we had the weekly food goof off day, featuring Velveeta Shells and Cheese. Sunday we got back on track, with a very healthy venison roast with lots of veggies in the crock pot.

But Joey isn’t into wild game. So I took the remainder of the cheesy mac, chopped in some ham and then microwaved a fried chicken cutlet to cut up into the mix as well. It was like a Monte Cristo sandwich, except in a bowl. And Joey devoured it.

Which reminds me to ask, how have you navigated the dietary approaches to autism? We’ve heard about the gluten free diet bringing good results, but our experience with imposing that on Joey years ago was that it just made him miserable.

Meanwhile, his favorite foods (like real and nasty pizza) make him happier, more cooperative and better able to function socially. In fact, the promise of favorites on particular days (Saturday is his pizza night, Mexican fast food follows his music therapy, etc.) adds structure to his week and enhance his engagement with other tasks and routines.

Which way have you leaned, food as fix or food as fun? And with what results?

The guy at the wedding

We’re still in the blissful fog after our older son’s beautiful wedding day.

A few thoughts on how Joey handled it:

  1. Allies mean so much.  Joey’s day program did a lot of work to help him understand and prepare for the wedding day.  Friends from church came with us as his companions at the ceremony and the reception so we could be Mom and Dad and not just caregivers.  Other friends watched him at home on rehearsal night, so he wouldn’t have to do two confusing outings on successive nights.  And the wonderful young lady who cuts his hair worked him into her busy schedule for a nice trim just ahead of the wedding.
  2. Favorite foods are a winner.  He likes the texture of breads and pastas, and the Bride’s family had a pasta dinner catered for the dinner.  He ate his entree at the reception.  Then he ate mine.  And most of the bread in the table basket.  And he was a happy camper.
  3. Preparation helps.  He’d been told about the suit he would wear, and had tried it on for alterations, and been reminded about it often.  And he wore it without complaining.  Wanted to lose the tie later in the evening, but hey, lots of people do that.
  4. joey in bishops chairIt is a blessing when people roll with whatever.  I think part of this is that the Bride’s side has special needs members, so they totally get Joey.  But even at the church, the ministers smiled and didn’t sweat it when Joey decided to plant himself in a chair normally reserved to the Bishop.  As you see here (sorry about the red eye), Joey assumed a comfortable posture and enjoyed the service from a seat of honor.

The acceptance and courtesy continued at the reception, where Joey was enjoying all of the music but didn’t want to dance.  Several ladies asked, and weren’t upset when he simply turned away instead of saying, “No thanks.”  Folks were tickled by the way he smiled through many of the songs, even when he covered his ears.  He stayed off to the edge of the dance floor, and had a very nice time.

When he got home, he stayed up a bit on his computer, looking up and playing videos of some of the tunes from the reception.

So now the unusual happenings have passed, and Joey is glad for the return of routine.  This is his donut breakfast/pizza dinner day, and he’s settled in to enjoy it.

Here comes the bride… or at least the groom’s kid brother

Today Joey’s older brother gets married.

Joey is not into dressing up, but we’re making that happen anyway.

We found one of his brother’s outgrown suits in a closet downstairs. A lady at our church did some alterations (there really wasn’t much it needed), and it will look good. That is, once we can get him into it.

The folks at his day program put together a “social story,” a mini-picture book to help him anticipate and be ready for today. It has pictures of his brother with the bride to be, the church, the reception hall, familiar people he’ll see, and the suit.

IMG_20131216_172509_015Along with that, I’ve had it hanging in view so he has to look at it often. Like a forlorn prisoner looking through the bars at the gallows outside, or like my stack of bills in plain view on the desk for payday, the suit is just inevitable now. There’s no avoiding this rendezvous with destiny.

Wow, I’m talking about Joey getting into the suit with language more appropriate for the wedding itself. The rendezvous with destiny part, not the gallows image.


Wish us well.