Big Sis

Today, in honor of Jonathon's sisters b-day I'm going to share a Lindsey story. We have a HUGE extended family we get together with often. On this particular day we had all decided to go swimming at a local rec center.
Jonathon was in autism heaven going down the same slide repeatedly with a ball. He liked seeing who would reach the bottom of the slide first, him or the ball. There were a couple of tween girls in the pool that day. The kind of girls who aren't actually there to swim. They just wanted to look good in the water.
Here came Jonathon down the slide for the 100th time, when one of these girls grabbed the ball he had been chasing all afternoon. Jonathon quickly said "ball please." The girl ignores him. He repeats himself, "ball please" and that little snit threw it at him!
My Mom claws instantly came out! I decided it wouldn't be appropriate for a grown woman to cannonball into the water and drown that little witch, so I set out to enlist Lindsey. She declined my idea, but says, "oh I have something better." She grabbed her cousin, Rachel, who was two at the time, and jumped into the pool. By now all of the extended family was lined up on the side of the pool intently watching to see what due this girl would pay! Lindsey pretended to "play" with her cousin, while she sauntered closer and closer to the offender and her cohort.
Once in place and "frolicking" right next to the tween girls I hear Lindsey yell out "OH MY GOD! RACHEL POOPED IN THE POOL! SHE POOPED IN THE POOL!"
Watching those two pool rats with a sheer look of poo panic was priceless! They could not get out of that water fast enough! So much for looking pretty! Had they stopped to listen or even look for a minute they would've heard Rachel saying "I not poop in the pool. I not poop in the pool!"
And they would've seen our family hysterically laughing so hard we could barely let the lifeguard know it was a false alarm!
Oh Lindsey! Your idea was so much better!   

The Looong Story

Last night was one of those looong nights that would not end! Who hasn't experienced a night where every time you look at the alarm clock you do the mental count down to the number of hours of sleep you could still possibly get if you stopped looking at the clock and went to sleep?!
I actually could have slept, but someone, JONATHON, talked all night long! It can be common for persons with autism to have sleep difficulties. Without night meds Jonathon does not get  restful sleep. I was a bit confused by his commentary, as I had heard Tim talking to him about taking his night medicine.
Throughout the night he vacillated between two scenes from Aladin, "I didn't have to, but did. I rescued you, you, Aladin, Jasmine and people and I rescued you, and I rescued you, and you and you!" and "Jafar is large and in charge!"
Finally around 1:30 a.m. I covered my head with the heaviest pillow I could find and fell asleep until 4:30 a.m. when Aladin, Jasmine and the people penetrated my pillow barricade!
Once up, I asked Jonathon why he talked all night long. He responded "I had a long story to tell." I don't know about a long story but it was definitely a repetitive story!
Upon further investigation it turns out Tim couldn't find one of his meds, so he didn't get it. Obviously the most important med that allows EVERYONE in the house to get a night's sleep!  

Travel Story #1 - yes there are more, many more!!

We are in a very difficult time right now, but anyone who knows me well, knows I don't stay in a place of sadness for long in regards to Jonathon's autism. I’d like to share a family story to bust me out of my funk!
Tim was in the Navy and we were traveling home to South Dakota on leave. We had decided to keep driving late into the night to take advantage of two sleeping kids. We were somewhere in Utah when we came around a corner and right in the middle of the road was a huge rock! Tim didn’t have time to swerve so we hit it. After Tim and I both got done having heart failure we felt relieved that the car seemed to be driving fine. Our relief was short lived when Tim noticed the gas gauge quickly falling closer and closer to the big orange E. The rock had punctured our gas tank! We were at least 30 miles from any town, in the middle of the night with two small children, one of whom had autism! This was not a good situation.
We made it to the next town and we were thankful! We found a convenience store and pulled into the parking lot. Our car was sitting at an angle so any remaining fuel poured out onto the pavement. We no more than got the car parked when I heard, “I don’t feel good. I think I’m gonna be sick.” Sure enough, I opened the door and Lindsey started throwing up! So, here we were at 2a.m. in a convenience store parking lot with fuel pouring out of our vehicle, a kid projectile vomiting all over the place and the other kid tired and cranky, wanting out of his car seat. We were a mess!
I must say that if you ever have to break down, Park City Utah is the place to do it! A police officer came by, took pity on us, found us a hotel room, and drove us to it. By this time it was close to 3 a.m. We smelled like fuel with an undertone of vomit. We were exhausted and looking forward to a nice comfy bed.
We checked into the hotel, got our room key, and walked down hall after hall after hall to get to this room. Tim put the key in the door, opened it… and the room was full of spare furniture! So we walked ALL the way back to the front desk. We got another room key. We walked ALL the way back through the halls. Tim put the room key in, turned it, pushed the door open and I heard him say, "Oh excuse me! I'm sorry!" just as a naked woman popped up from the bed! Lindsey’s eyes popped out of her head as she yelled “Daddy! That lady is naked!” Soooo, we walked ALL the way back to the front desk, again! We got another room key. We walked ALL the way back through the halls. This time, we paused outside the room door wondering what will door number three hold for us! Thankfully, nothing but the angelic glow of our beds!
By the time we all got washed up and hit the pillows it was 4 a.m. We were so thankful for a bed that night! The next morning we got up, the police came back, picked us up and took us to our car.  
Tim thought we should see if we could get the car started, so we could just drive it to the repair shop and not have to have it towed. I got in, turned the key and rrrrrrr ,nothing. I try again rrrrrrr, nothing. I decide to try one more time. As the car is protesting, and I was starting to lose my sunny disposition, I received directions from a little voice out of the back seat… “OPEN THE THROTTLE! AND KEEP IT OPEN!!” Jonathon was echoing the scene from Chitty Chitty Bang Bang where Truly Scrumptious is trying to start her car but failing miserably!
He has a way of bringing a smile to our faces at the most stressful of times!
P.S. We made it home safely to South Dakota!  

If...

If only love were enough...

Blessing

I am convinced the reason we cannot see our future is because we would never have the courage to live our lives if we knew the challenges we were to face. Life offers us both blessings and burdens. Which one an event in our lives becomes depends on ones perception. Even in our rough times Jonathon is nothing but a blessing.

Where?

Years ago, when Jonathon was first diagnosed we found ourselves at the beginning of the push for early intervention services. Jonathon got some, but definitely not what he should have. Here we are 18 years later, finding ourselves at the front of the pack again.

Where are the services for adults with autism? Where are the adults with autism? Certainly they aren't all living an institutional life? From the time Jonathon was 10 years old I have been asking those questions at every conference I have attended, fearful that we would get to adulthood and there wouldn’t be services. My fears are coming true.

Currently there is an even bigger push for early intervention services, which is great for those younger kids, but what about mine? I’m only one voice, but I want to SCREAM… ‘OUR KIDS DO GROW UP! WHAT ARE YOU GOING TO DO FOR OUR ADULT KIDS WHO AREN’T ABLE TO REACH INDEPENDENCE?! HELP ME! HELP MY SON! DON’T WRITE HIM OFF BECAUSE HE’S AN ADULT!'

I want more for my son than a group home or institutional environment, but without appropriate adult services and supports I feel his freedom slipping away.

I may be mad, I may be tired and I am heartbroken, but I will continue to fight for him to have a quality life.

How?

How? How do Tim and I even begin the thought process to send our child away?

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.