Thursday, January 24, 2013

I'm back! Haven't written in MONTHS. Not sure why, just not feeling it I guess. I am going to try to write at least once a week! That's my goal!

I last wrote in April. Jonathon was doing so well behaviorally after he turned 21 and was "done with school forever." Probably in August we started to see an increase in his daily "rumbling" behavior. We've had major blow ups, at least once a month, since September.

Our plans for Jonathon have always been that we would keep him home with us, as long as we were capable of meeting his needs. I am against institutional living, of any kind. I consider group homes, mini institutions, which is why I can't believe where we are... unsure of what Jonathon's future will hold. I feel a bit foolish for thinking we could do it. Or that we were, somehow, parents who would be able to beat the odds and keep him home with us for years to come. That we would be able to put him in his own home with care takers coming in to care for him. Was I being na├»ve, or hopeful, and what's the difference in this case? 

These past months have been difficult. Our hearts are heavy and broken. At this time we are unsure of what Jonathon's future will hold for him and for us as a family unit.

Wednesday, April 18, 2012

Badlands

While in South Dakota we toured the Badlands. I haven't taken Jonathon before because I was afraid he would obsess on going back, just as he has obsessed over the T-Rex dinosaur at Wall Drug, which is outside the Badlands. I'm not a fan of going to Wall Drug as the drive is LONG and there is not much out there. Surprisingly, Jonathon didn't seem as fascinated as I thought he would be, but then again we ended up doing the usual "speed tour" that we do when Jonathon is with us.

We were out in the middle of nowhere in the Badlands when Jonathon said, "I have to go to the bathroom. You better hurry Vickie." I pulled over and told him to just go outside, quickly. Soon, too soon, he was back in the truck. I asked him if he went and he informed me that he didn't have to go pee, but he was going to have "poop mush." GREAT! I was not about to try to teach him how to go  #2 outside, so checking the map we discovered we were 12 miles away from a campground. I put the pedal to the metal and the speed tour of the Badlands began! He made it to the porta potty just in time!

A few hours later, as we were heading back to my parents, Jonathon started having a blow up. It got to the point that I needed to get him out of the vehicle and get some space between him and us. I told him I was going to stop at a rest area and asked if he knew what that was. He told me "we make it rain." I was confused by his response so I just said "okay..." and explained that we get out fo the vehicle, walk around and go potty at a rest area. I pulled up to the rest area, Grama and Grampa got out and went in to use the restrooms and Jonathon headed to the bushes and trees across the picnic area. I was so proud of him for putting space between himself and us! I was thinking WOW! Maybe he's getting it! He realizes he needs to go and be by himself for a bit! I was impressed... until I looked over and... looked again... and... realized he had WALKED over to the bushes and trees and was "making it rain?"

OH GOOD LORD!

Thankfully there was only one vehicle in the parking lot and they couldn't see him relieving himself!

Thursday, April 12, 2012

Pulled Over... Again

The other day, Jonathon, my niece, and I were headed into Rapid City. I wasn't paying attention to how fast I was going and got pulled over...again.  I may have a bit of a lead foot, so it may be that I've been pulled over a few times, but I will never reveal just how many!

As the deputy approached the window and before I could say anything, Jonathon piped up and said, "SO! WHAT SEEMS TO BE THE PROBLEM OFFICER LADY?!" ugh... I was thinking, thanks Jonathon! You just put the nail in my coffin! Instead... I got off with a warning!

After we pulled back onto the roadway Jonathon says "we should teach that police officer how to race Vickie!" Uhmmmmm... probably not Jonathon!

Tuesday, April 10, 2012

Outlook

Today we went for a drive through Custer State Park. Jonathon was getting a bit grumbly so I decided to pull over and let him stretch his legs and go for a little hike up a trail. As usual, he walks much faster than I do so he reached the top ahead of me. As I approached the top he said "WELCOME TO EVERYTHING VICKIE!" and was excited to show me the amazing view of the Black Hills.

He doesn't have the typical words to say "this view is awesome," but I think his language is so much better!

Wednesday, April 4, 2012

You're The Best

Sometimes he just melts my heart.

Yesterday in the car he says to Tim and me, "you're the best Vickie-Honey a kid-young man could get and Daddy Tim you're the best Daddy Tim a kid-young man could get."

These moments are rare when he is able to form his thoughts about his feelings and share them with us verbally... it is such a blessing.

Jonathon, you are the best son a Daddy-Tim and a Mom-Vickie-Honey could get.

Tuesday, April 3, 2012

Eye Contact

Eye contact is overrated for people with autism. They can find it difficult to take in everything a person's face is doing and pay attention to what is being said. If you think about all the movements a person's eyes make while someone is talking it really is a lot. 

People's eyes not only dialate, move, blink, and twitch but some change colors as well. For people with autism trying to focus and concentrate on what a person is saying and being expected to give eye contact  is too much. Within the past year, I've noticed Jonathon looking, not at my eyes, but at my temples. He will actually stop the conversation and move so he can get in just the right position. I've started to talk to him about what he is looking at because I would eventually like to hear, from him, the "why" behind his preferred eye contact, or lack there of.

I'm not a parent who demands eye contact. He glances at me enough for me to know he's listening... that's good enough!

Saturday, March 31, 2012

'Mirror Mirror'

I'm coming to the realization that I have a love/hate relationship with Disney. Yes, they have brought years of entertainment to Jonathon. Yes, they have helped Jonathon gain knowledge about this world he may not have gained otherwise... BUT... sometimes, they simply make my life hell! For one thing, they changed the release date of 'Pirates, Band Of Misfits.' That has gone over like a lead balloon in our house! Then, Jonathon and I went to see 'Mirror Mirror' yesterday. Ugh! Sometimes I think our lives are a reality show and no one has bothered to tell us because the crap that pops up really is unbelievable!

In the movie 'Mirror Mirror' they have little people playing the dwarfs. What are the chances, after watching that movie, that we would cross paths with a little person... in Casper WY, of all places? Like, how many little people even live in Casper? There's probably like ONE! Yep, you know it... we ran into a grocery store after the movie and who do I see walking down the aisle towards us... a little person! I'd like to think I was praying, but, no, it was pure groveling! My thoughts were pretty much, "REALLY?! SERIOUSLY?! ARE YOU KIDDING ME?! PLEASE GOD! DO NOT LET JONATHON SAY ANYTHING! PLEASE! I'M BEGGING YOU! JUST FOR A BRIEF  PERIOD OF TIME LET JONATHON BE MUTE!
PAA-LEEEEEE-ZZZ!"

It was all playing out in my head... Jonathon walking up to this little person and saying "HELLO THERE little dwarf man from Mirror Mirror!" "Are you going to steal my gold? Where's your long legs? Where's Snow White? Do you live in a tree? Is your name Chuckles? Are you going to steal my clothes?" I considered ducking behind the chip display and falling to my knees to let God know the urgency behind this prayer, but... I decided I should probably start thinking of my explanations to this little person! I hate being caught off guard. I tend to ramble in unexpected situations. I could see myself saying "I'm so sorry. We just got out of the movie 'Mirror Mirror' and there were little people playing the dwarfs and your a dwarf and so Jonathon is drawn to you and your dwarf size. We really don't say dwarf, because dwarf is not "People First Language." "We would say little people, but you're the first little person he's ever seen, so he sees you as a dwarf, because of the movie, not because WE say dwarf. We don't. I assure you we DO NOT SAY DWARF!"

I caught myself NOT BREATHING as this little person got closer and closer. I might have even been wincing as I waited for the oncoming collision.... Jonathon getting closer...closer.... and... here it comes... bracing....... bracing.........   "HELLO THERE! HAPPY SPRING!" and he kept right on walking!

I felt like a deflating balloon as I let out a sigh of relief! I think I may have even mumbled... "THANK YOU BABY JESUS!"

Jonathon greeted that young man as he did every person he encountered last night. "HELLO THERE! HAPPY SPRING!" He is an amazing soul.