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 naïve, 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.

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!

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!

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!

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.

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!

'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.

Laundry

The other day, as I was getting ready to do the laundry, I called upstairs for Jonathon to come down and help. I could hear his grumbly response of "oh alright!" Now, I don't want anyone to get the impression that I give an order and he comes running. It usually takes him anywhere from a few minutes to quite some time, with reminders, to disconnect from what he is doing to come and see what I have in store for him. He needs that time to get used to the idea that he is about to have to do a chore. If I try to force him to come before he is ready... the only thing that will be accomplished is behavior problems, so I give him the time he needs, but always encouraging him to "come on." When he got downstairs and I told him he needed to right his pant legs. He was quite entertaining!

Afraid of getting germs on his hands, he decided the best method to right the pant legs was to shake the living daylights out of them! I showed him how to grab the end of the pant leg and pull it through, but he wasn't having any of "those germs" getting on his hands! He then asked, "first I fix my pant legs and then what?" That's code for, I'm doing a chore, so you will need to give me money dollars for my labor! I told him "I am not paying you to fix your own pant legs!" He asked "why not money dollars for the pant legs?" "Uhmmmm, because they're your pants!" I have to say, he did take my response better than I thought he would... of course, I did tell him and then walked off! Nice try though, to get paid for taking care of your own things! :)

Lunch Date

I was so excited when Jonathon came up to me and asked me to lunch! He said "we could eat that lunch in Casper at the restaurant." My thoughts were WOW! I think he's asking me on a lunch date! That is awesome! I decided to get more information about this Mom-Son date. He said we could go to Applebee's, or Old Chicago. Again, WOW, real restaurants, no McDonalds, or Wendys, but real restaurants! Then I made the mistake of asking him "so you're using your money dollars to take me to lunch?" His response, "You have money dollars in your purse Vickie-Honey." I replied, "but if you're asking me to lunch shouldn't you use your money dollars?" He informed me HIS money dollars are in his bank and they are for Disneyland! Here I got all excited he was asking me for a lunch date and what he meant to say was "I'm hungry and you should take me to Casper to eat out!" LOL! Oh well, maybe someday the penny pincher will take me to lunch AND pay for it! Oh Jonathon!

 

Left Behind

As I've stated in previous posts, Jonathon has been the victim of more than one traumatic event by people we should've been able to completely trust. The first incident that was pure neglect, and should have never happened, occurred when Tim was in the Navy and we lived in Washington state.

On this particular day, the bus came, as it did every afternoon, to pick Jonathon up for transport to his school approximately 30 minutes away. After I got him on the bus, the driver secured him in his safety belt and off they went. I don't remember what, but something was going on that day and I was going to drive up to the school. Once the bus pulled away, I went back into the house, got myself ready and left to go to the school. When I arrived at the school, I noticed other children who rode the bus were there, but Jonathon was no where to be found.

I approached Jonathon's teacher and asked "where's Jonathon?" I could feel the blood drain out of my face when she said, "he came with you today." My words were slow as I stated, "No, he rode the bus." She tried to convince me I was mistaken and that Jonathon had come to school with me. Raising my voice to her, I stated, very matter of factly, that I had put him on the bus myself and if he did not get off the bus, then where was he?! Finally sensing my mounting panic she raced to the telephone and placed a call to the bus garage. I was absolutely shocked when the teacher came back to tell me they were trying to find him! What did she mean "trying to find him?"  How could he be lost? He had been belted into the seat and could not get out of that seat belt without an adult letting him out. I was instantly sick to my stomach. I could feel, and hear, my heartbeat pounding in my chest during the minutes that slowly passed while waiting to hear back, from someone, anyone, as to Jonathon's whereabouts.

Finally the call came in, they had found him. He was being brought to me at the school and would be there in 10-15 minutes. The teacher started explaining to me what had happened and I could not believe what I was hearing. Jonathon had evidently fallen asleep on the bus and slumped over onto the seat. When the bus arrived at the school and all the kids got off, apparently no one noticed Jonathon did not unload. The driver drove to the bus garage, parked the bus in the garage and left for the day! Jonathon was found, on the bus, in the bus garage!

When Jonathon finally got to me... I was furious! My poor wee man was soaked with sweat, his face was beet red, he had wet his pants, and he was sobbing! I can't even imagine how terrifying it must have been for him to wake up and everyone is gone and he is strapped in his seat... no one coming to help him. He was four years old! Thinking about it, even now, makes me sick to my stomach. I try not to think of what he went through, but I do. I wonder if he was crying out for help. Did he even know HOW to cry out for help? He barely had any genuine language at that age. I know it was traumatic for him, but we will never know the extent.

We later found out that ALL bus drivers are supposed to walk the length of their buses when parking them. This driver did not do that. She parked the bus and left. The next time we saw her, she had been reprimanded, and had the guts to try to turn the incident around on me! She accused me of not making sure Jonathon was getting enough sleep, and that I needed to "find a way to keep him awake on the bus ride to school." Seriously?! He was four! Four year olds sometimes fall asleep while riding in vehicles! Had she taken 30 seconds to walk the length of the bus it never would've happened.

Unfortunately as heartbreaking as this incidence was... there have been others that were so much worse!     

Secret Keeper

I'm tired of being the secret keeper of events that have happened in Jonathon's life. The full extent of injustices done to him by "well meaning" people have caused him trauma, after trauma, after trauma. Sadly, do to his inability to effectively communicate, we will will probably never know the full extent of the damage, but are left to deal with the aftermath.

When I have shared past events that have happened to Jonathon with people, I have been called a liar. I've been told that these events couldn't possibly have happened by "professional" people. To me, being a "professional" means the person has received some kind of a formal education or experience in that CHOSEN area of knowledge. Being a so called "professional" does not mean stupidity has escaped these people!

One of my favorite sayings... "The road to hell is paved with well meaning professionals!"  

Stay tuned. This blog is about to get a lot more interesting!   

Wings

It's often hard to read between the lines of Jonathon's communication style to try to figure out what he is thinking and trying to communicate to us, or to the world. Death is still a topic of great concern to him. As I have said before, his cognitive abilities are around that of a five year old, which would align with his vision of what it will mean to be dead.

On our way into the dentist today, Jonathon mentioned that he didn't want his heart buried in the cemetary with his bones and skin. I explained, that even though our bones and skin stay here on earth, the good part, our spirit, that lives inside of us, will go to heaven. I could tell by his calmness that he really wanted to listen, concentrate and understand. He was a bit put off that his body would have to stay here, so I said "oh, it's ok! You won't need your bones and skin in heaven!"
He replied, "I won't?... What about my wings?"

Oh Jonathon, you will have your wings.

WORRIED!

Jonathon has had an unexpected life lesson this week. His Daddy-Tim went for a doctor's appointment and ended up being admitted to the hospital with internal bleeding. I was worried how Jonathon would react since I had told him I was taking Daddy-Tim to the doctor and then we'd be home! Deciding how to handle these unexpected situations with Jonathon can be tricky. Life is going to happen whether our kids with autism understand it or not, so keeping "hard" life experiences from them is not going to help them in the long run. The truth is always best.

Tim and I talked about it and decided to have my sister bring Jonathon up to the hospital so he could see for himself where his Daddy-Tim was, what he looked like, that there are people who are trying to help his Daddy-Tim, etc... I think it's important for our kids to see the processes behind life events. Even if we, ourselves, don't know what the outcome may be.

Sometimes words aren't needed to know how a person is feeling. The initial look on Jonathon's face was one of deep concern. I could tell he was very scared his Daddy-Tim was going to die. We have had a number of deaths in our extended family over the last two years. Daddy-Tim getting sick was to close for comfort for Jonathon.

How did Jonathon deal with his concern? Every hospital staff who came in Daddy-Tim's general area (General area being the entire sixth floor of the hospital!) was accosted with "ARE YOU FIXING MY DADDY-TIM?" When the answer was "no, he's not my patient" or "I'm not but somebody is" Jonathon response was "WHY NOT?!" Followed by a less than pleased facial expression! He even decided to advocate for Daddy-Tim's roommate's care on the other side of the curtain!

When Jonathon got home from the hospital he made a postcard for his Daddy-Tim. It was a bit large for a postcard... 8x11! His message... "Daddy-Tim Im sending you a postcard Im so worried."
What progress! For Jonathon to be able to not only verbalize his feelings but to write about them as well... that's HUGE!

ps... Tim is out of the hospital and on the mend!

Sorry... again!

The only thing I can guarantee will happen with this blog is that LIFE will cause unforseen breaks in my posts.

For the first time... ever... I went on vacation, by myself, for two weeks only to return and find my husband, Jonathon's Daddy-Tim, very ill. I ended up taking him to the ER where he was admitted to the hospital. During this time I ended up with walking pnuemonia... ugh... so goes life!

Reunited and it feels so... autistic!

I just got back from my two week trip out to Kentucky to see our daughter. I went by myself, leaving Jonathon in the care of Tim, my sister and niece. On the plane ride home I was thinking of a reunion comparable to those in the movies... you know... arms outstretched, running to your loved one, a big hug and kiss, maybe even a tear or two... yeah right! That is definitely Hollywood when it comes to my family! There was no running, I've missed you, I'm so glad you're back airport reunion!
When I walked into our hotel room (I had to take a shuttle to the hotel because my husband hates driving in larger cities so, that right there threw my airport reunion dream out the window!) Jonathon looked over at me from his computer as I exclaimed, "JONATHON!" and outstretched my arms and stood there... waiting... expectantly... waiting... and waiting... Finally, he again looks up from the holy grail, his computer, and says "Vickie."
Thinking he hasn't REALLY seen me yet, with my outstretched expectant arms, I move in closer, eyes wider than before, smiling even bigger to announce my arrival... waiting... waiting... nothing! Determined to get an "Oh My God You Are Back" reaction, I again move in closer, stretch my arms out even further, open my eyes even wider, smile even bigger and again, with even more oomph exclaim, "JONATHON!" He looked at me again, as I made my "TA DA! HERE I AM" motion, to which he outstretched his arms, plastered on his autistic smile, replied "Vickie" and mimicked my "TA DA! HERE I AM!"

So much for a Hollywood reunion! I decided I should just lay it on the line and asked for a hug, to which he replied "Oh yes, Vickie, oh yes."

He keeps me humble, that's all I can say!

Finally!

UGH! I haven't been able to blog for awhile now because of my last post I titled "Huge." It came up as questionable content, so until it was "investigated" I was locked out of my own blog!

It's sad, in this day and age, how an innocent topic can be so wrongly interpreted! Now that I'm back up and running I will be posting again!

HUGE!

Heading into Casper earlier today Jonathon commented "Am I huge Vickie-Honey?" I replied "you are a big guy Jonathon." He then says "You are huge too." I looked at Tim and said "I think he just called me a fat ass!" Jonathon replies "THAT FAT ASS IS NOT VERY NICE! YOU SHOULD SAY NICE WORDS! You are huge like me Vickie-Honey."

I'm not sure what the whole "huge" thing is about... kind of afraid to ask since he does tend to be brutally honest! LOL! 

NO LIPS!

Today is Valentines Day. Tim sent Jonathon downstairs to tell me "Happy Valentines Day," but what he came and told me was "Daddy Tim needs you." When I came upstairs Tim asked if Jonathon told me "Happy Valentines Day." I told him no and we called Jonathon into the room. I said "Happy Valentines Day Jonathon! I need a Valentine kiss!" Jonathon only gives Eskimo kisses, with his nose "NOT THE LIPS CUZ THEY'RE DISGUSTING!" As he was coming in to give me my "nose kiss," I told him I wanted a lip kiss and tried to sneak in a smack on the lips! He interrupted my Valentine intentions with... "CUT! CUT! CUT! NOT THE LIPS VICKIE-HONEY! THAT'S SO DISGUSTING!" .......sigh....... oh well......... at least I got a nose kiss!

Lottery

We stopped at a gas station tonight so I decided to buy a lottery ticket. I told Jonathon "pick five numbers." He chose 15, 25, 35, 45, and 58. For the powerball it said "choose one." Yep... he selected the number one! Yeah... We didn’t win!  LOL

It's Raining!

Jonathon and I are at my brother's house watching his two kids while he and his wife are on vacation. I got the kids to bed tonight and Jonathon in the shower. Pretty soon my nephew comes into the bedroom and says "Jonathon's laugh is so loud. I can't sleep." He was correct, Jonathon was hysterically laughing while taking his shower. I decided if I wanted the kids to get to sleep I better go check on Jonathon.

When I walked into the bathroom it was quite obvious WHY Jonathon was laughing so hard. The  shower head is a removable one, the kind with a hose on it so you can SPRAY it wherever you want... Jonathon's area of choice to spray... the bathroom ceiling! When he saw me he let out a huge laugh and said "did I make it rain in the bathroom?!"

UGH!  Looks like I get to wipe down my brother's bathroom from ceiling to floor!

Note to self... NEVER, EVER, EVER, buy a removable shower head for our bathrooms!!