Cure

The only times I wish there were a cure for autism is when it threatens to take Jonathon away from his family. Today I wish there were a cure.

The Bar Scene

Recently Jonathon was invited to sell his Kurmudgeon T-shirts at a bar. Tim and I were a bit skeptical. Did we really want to expose Jonathon to a bar environment? We weighed the pros and cons.

Super Pro – People are drunk, especially on St. Patrick’s Day, he could sell a lot of t-shirts!

He is 21 now and many 21 year olds do go to the bar.

Jonathon drinking was not a concern. He has picked up the occasional beer or wine cooler, that was sitting around, taken a swig and was not impressed!  I think his exact words were “YUK! THAT’S DISGUSTING!”

Cons - would intoxicated party goers be verbally mean to him?

Would he handle the loud music?

Would he enjoy the type of music?

Would he handle the yelling, drunken rants, and verbal altercations?

Would he be bothered by the cigarette smoke?

So, okay, weighing it out we had a TON more cons than pros, but we decided to take him.

It’s hard, with Jonathon, to know how much information to give him. Too much or too little and we have huge behavior issues and, believe me, we seem to screw it up often! We either give him too much too soon, or not enough too late! I had told him a few days earlier he would be selling his t-shirts. I waited until just before we left to visit about how he needed to behave at the bar. We have learned over the past year that he is more successful if he knows beforehand what his role is in a particular environment. Using this technique would not have worked a few years ago. He is at a point in his development where he is open to hearing, from us, what is expected of him. Now that I think about it… is it natural maturation on his part or ours for dealing with the autism?! J

I tried to picture things in the environment that would be attractive to Jonathon. The pool table and the dart boards… definite enemies of the evening!  When I visited with him I told him there would be dart boards and pool tables. I talked about how I knew he liked to play pool and throw darts, but his job that night was to sell t-shirts. If he wanted to play pool or throw darts, he and Daddy-Tim could go back a different night to play. His job was to stand by his table and sell his t-shirts.

I don’t drink, but a Prozac Smoothie didn’t sound like a bad idea for this bar room adventure! The bar was everything you’d expect from a rural Wyoming bar. A darkened smoke filled room where the corners were overflowing with cast off equipment. Wouldn’t ya know it… they put us in front of two dartboards! Unplugged dartboards, but still not a good situation!

I am very pleased to report that behaviorally Jonathon was absolutely AMAZING that night! He ignored the pool tables and dartboards! He stood by his table. We walked through the crowd so he could hand out business cards and his story about the business. He did a fabulous job! He even ignored a couple of crazy drunk chicks who got into a screaming match right by our table. Well, I guess I can’t say he ignored them. He was busy doing echolalia. If he noticed them I think he thought it was normal for that environment. Everyone has to yell at each other just to be heard.

Sale wise… we sucked. He sold three t-shirts and we donated two to the Hippo-therapy program that was fundraising that night. Oh well. What we gained that night was more valuable than money. Jonathon gained increased access and knowledge to the world. It isn’t easy to take/expose Jonathon to new situations, but is it in his best interest? YES! It would be easier to stay home with him and keep him in a predictable environment, but life isn’t predictable. I feel strongly that for our kids to understand the world they have to be IN the world as much as possible! Parents who avoid taking their kids to the grocery store, or Wal-Mart, or where ever need to ask themselves – who is it easier for to stay home? The parent or the child? My message to parents… get off your asses and take your kids out in the world!!   

WHY GOD WHY???

God has forsaken me! Well, technically He has forsaken my loofa! It wasn't long ago that I asked God to protect my new loofa from Jonathon... sadly... the loofa was found lying on the shower floor this morning. Definitely a sign of violation. It was with a heavy heart that I called Jonathon downstairs and asked him "what did you use the loofa to scrub?" In his deepest man voice, the words I dreaded... "to scrub my tallywhacker." Ugh, well of course he did!

Fitting together

My family just returned from vacation. Tim, Jonathon and I flew into Las Vegas from Denver. Lindsey flew in to Las Vegas from graduate school. It was the first time the four of us have been back together for an extended period of time since Lindsey left for college six years ago. I don’t think any of us were prepared for how different our family would be once we were together again.

Linds has been out of our home for six years now so coming back into the fold with Jonathon when she isn’t used to his behavior was… different. It was different for all of us. It was definitely a learning experience. We had to figure out how to be together again as a family .  

I was stressed worrying about giving enough time to Lindsey while caring for Jonathon.  Each of us had our “bitchy” moments and needed to take a step back. We needed to learn how our family “fit.” Lindsey and I visited about the difficulties of trying to be out as a family and a part of the world when Jonathon struggles so hard to handle the world. We concluded that there are no easy answers or fixes. The best we can do for each other is be conscious that each of us comes from a different, unique perspective. We won’t always agree but we will always get through our challenges together, as a family.   

Disneyland

It was about 18 years ago when we last visited Disneyland. Jonathon was three at the time and had just been diagnosed with autism. We were in that stage when the diagnosis is so new that it sounded awkward, uncomfortable, coming out of our mouths. We knew it was true, but speaking it released it for the rest of the world to know. Saying that word, autism, somehow made it even more real.  

We were struggling with Jonathon’s behavior; trying to enjoy our visit. I thought he’d like the submarine ride so we embarked for our underwater voyage. We didn’t even get submerged before we had to have the ride pulled back up to the surface so we could disembark. I broke down in tears. Here we were in the “happiest place on earth” and our family didn’t fit.

Fast forward 18 years. We’ve planned our first family vacation EVER!  Tim and I are hopeful that our family has reached the point of being able to go back to Disneyland and be a part of the Disney celebration… hopefully anyway.

The morning started out a bit rough. I pulled Jonathon aside and reminded him that his job was to “handle it.” Handle it, are the words he has chosen to use when he needs to be patient and calm. Once on the shuttle headed to Disneyland he settled down.

Our first ride was of course, Pirates of the Caribbean. Jonathon has been talking about that ride for as long as we’ve been saving for this trip… a couple of years! He was in complete awe! He sat through the ride and was completely still and quiet, studying it, taking it all in. Each new ride was better than watching him open a gift. His world, the world of his movies was coming to life for him and we got to share those moments with him.

Tim and I sat together on one of the rides with Lindsey and Jonathon ahead of us. Tim and I visited about how far we’ve come as a family… the wave of emotions that hit me was overwhelming and I found myself in tears, but this time for a very different reason. We moved from ride to ride, we sat and had lunch, we shopped, we did everything all the other families were doing… and it was absolutely wonderful!     

Please God!

Bought a new loofa... God if you could keep an eye on Jonathon so he doesn't scrub his behind with this one it would be VERY much appreciated!
Thanks, Mom-Vickie

Happy Anniversary

It’s been 26 years ago today that Tim and I were married. That day, when we were so young and excited to start our lives together, seems so long ago. I’m convinced the reason people cannot see their future is they would not have the courage to live their lives if they knew the challenges they were to face.

There have been plenty of times when each of us could have decided to walk away from our marriage, but we didn’t. We chose to stay and work through whatever challenge we were facing. For everything we have been through over the years with Jonathon… there is no way either of us could have done it alone.

Thank you Tim for being my partner and for sharing the joy our son brings to both of us.

I love you.