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!!

Separation

I have never been a parent who has been able to see Jonathon as being separate from his autism. I guess because his autism is so pronounced. In the past few years he has been able to communicate more and more in his own genuine language, without movie talk, to let his needs be known, but other than that it is generally movie talk. Seeing the autism specialists may be helping me to "see" the Jonathon that is under the autism.

Since our visit to the autism specialists and our new way of communicating with Jonathon I'm starting to see that we can possibly make a significant improvement in how he interacts with us. It is definitely hard. Mainly because we have all been so rote in how we communicate with him and he with us. We now have to retrain ourselves and him. I know it will be worth it in the long run. It's just hard to break old habits.

I've noticed that if I don't catch (redirect) him  on his first "attempt" to converse (him using echolalia) he tends to get aggravated and thinks that I am ignoring him. For example he might say a line from a movie; if I don't intercept that thought with something else of significant "value" such as "Jonathon, I am trying to decide what to make for dinner tonight. I'm thinking about cooking a roast or chicken." That is a comment that is "current" to what we are doing and it has value compared to "I like your shirt." The shirt comment is a lame attempt at me trying to turn him "off" from his movie talk and he recognizes it as me avoiding his thoughts.

It's been a couple of weeks since our visit with the specialists. It's easy to fall back into our old habits. I find it the most difficult to stay on our new communication style when we are out in public. Mainly because my thoughts are directed at trying to get errands done and I tend to do the "uh huh, yes, no" type of answers. Outings are the worst time for me to revert back to old ways! Outings are when Jonathon's anxiety increases and we have more behaviors. I need to think about and figure out a way to make our outings more successful. I may either have to take someone else with me to help keep him "current" or I cut our trips down to just a couple of errands and the focus is on him and not the errand.

Boy this is a lot of work!

Identification

There are times when I look back and the progress we've made is incredible. Other times I realize we appear to be treading water.

Yesterday Tim and I were doing some work in our laundry room and needed the kitchen stool. Instead of Tim or me having to fight our way out of all the stuff we'd moved around I thought it would be easiest to yell upstairs and ask Jonathon to bring us the kitchen stool. Turns out it wasn't going to be easy.

I yelled upstairs and Jonathon came running. I knew I needed to keep my wording short, as he tends to get stuck on one word out of the entire request, if he's not familiar with the request. My wording was "grab the white stool by the kitchen stove." He came down with the "white" window we had taken out to clean which was in the kitchen and "by the stove." Tim said "that's a window. We need the white stool by the stove." Jonathon ran back up the stairs and reappears with a "white" box that was sitting in the kitchen. I decided to give him a little more information... "Jonathon it is the stool that we stand on. It is white with black steps." He runs back up the stairs only to reappear with... another white item. Obviously Jonathon's brain was stuck and he was not going to move past the "white" part of the request, so Tim crawled through the laundry room mess to go upstairs and show Jonathon what we were requesting.

I think this is an example of a couple different things going on in his brain. One... as the autism specialists pointed out, his mind gets stuck on certain events or topics. In this instance his mind caught the word "white" and couldn't move any further into the request being made of him. He knows he needs to bring us something "white" so begins the guessing game. The second thing, I believe, is going on, is his learning level is that of a small child. He's stuck in those early formative years when small children learn by asking "what's that? what's this? etc..." The difference is Jonathon doesn't ask the wh questions that young children do when experiencing their environment. You know... the questions that tend to drive parents crazy! For Jonathon a piece of his development is missing. Where we, (Tim and I) fall short is assuming he knows what everyday items are called.

Can you imagine living in a world where you don't know what everyday items are? He tends to know how these items work, but has great difficulty identifying them. Years ago we had a similar experience when I asked him to go downstairs and bring me the blue dustpan. Every attempt he made to bring me the correct item ended up being something blue, but not the dustpan.

The part of this that makes me sad for him is he feels like he's failed when he brings the wrong item and repeatedly apologizes. It isn't a big deal to us but it is to him. I think he feels like he's stupid for not knowing. Really it would be equivilant to me being in a car repair shop and someone requesting a tool or a car part. I would have absolutely no idea what they were talking about! They could describe the item to me and I would probably do the same thing Jonathon does... narrow down my options as to what was being requested. The difference is I have the ability to "pick" my first description of the item and then move on to the next identifying characteristic of the item, then the next, and the next until I have found the correct item being requested. Jonathon's brain doesn't let him narrow down the identifying characteristics to find the correct the item.

I'm going to have to ask the autism specialists if there is something we can do to help him in this area because I honestly don't know if his brain can get past the point of where it seems to get stuck in the identifying process. We see this with names of family members as well. People who's names he should know but doesn't.

Just another mysterious piece in how his unique brain works.

Good or Not?

Jonathon had gotten in the shower upstairs last night and after awhile Tim heard a pounding on the wall. In our family the pounding on the wall means "I need something! Someone come help!" Tim went into the bathroom and asked Jonathon what he needed  to which Jonathon replied "I need those pajamas." Tim came downstairs chuckling and reported to me that Jonathon finally figured out what the knocking on the wall meant. I see this as both a good thing and a bad.
Good, in that he has figured out if he needs something, while in the shower, he can knock on the wall and someone will come help. Bad in that the little stinker knows he's supposed to go downstairs and get his jammies BEFORE his shower and I think he was just being a lazy!
Oh well... who doesn't try to get a family member to do something for them if they can!! LOL!

My Vickie

This morning Jonathon came into the kitchen and leaned on me, which is as close to a hug as I get without having to ask for one. I said to him "I'm so lucky." He responded "what?" I repeated "I'm lucky because I have..." I paused waiting for him to give his input... he came up with nothing, so I filled it in with "I'm lucky because I have YOU!" To which he replied "I'm lucky to have you for my Vickie." Aaaah! I love him!

He Aint Heavy - He's My Brother

For all the siblings who carry a heavier load than most when their sibling has autism.

I found this in my husband's elementary school papers, which means it's like 40 years old at least, I thought it was a poem, but my older friends told me it's a song, originally sung by the Hollies.

HE AIN'T HEAVY - HE'S MY BROTHER



The road is long,

With many a winding turn

That leads us to who knows where,

Who knows where.

But I'm strong,

Strong enough to carry him;

He Ain't Heavy, He's My Brother.

So on we go;

His welfare is my concern,

No burden is he to bear,

We'll get there.

For I know,

He would not encumber me;

He Ain't Heavy, He's My Brother.

If I'm laden at all,

I'm laden with sadness

That everyone's heart isn't filled

With the gladness

Of love for one another.

It's a long, long road,

From which there is no return,

While we're on our way to there,

Why not share?

And the load

Doesn't weigh me down at all;

He Ain't Heavy, He's My Brother.

Tutoring

Jonathon tends to get a bit poopy when asked to do any type of learning activities that resemble schooling, so to help with the situation I found him someone to be the teacher to and not the student. He is now "tutoring" his second cousin, Mackaylee, who is four.

Today's assignment for Mackaylee was to read her a story, work on her ABC's and walk her to the library. (Not by themselves!)
When I asked him about helping Mackaylee learn her ABC's he rolled his eyes and said "UGH! I will sing that Mackaylee the song about the ABC's!" LOL!

It's a win-win situation for us. Mackaylee didn't have to go to daycare and Jonathon is now in a position of leadership, which in turn gives him something to feel good about.

Sometimes when addressing our kids needs... if going in the front door causes to many issues... try the back door instead!

Stealing

We ran in to Casper today to pick up some paint from Home Depot. Jonathon was struggling with echolalia so in an attempt to "turn off" the movies playing in his head I thought I'd talk to him about why we checkout at the stores and pay for our stuff. Yeah... the conversation didn't go as I'd planned... surprise, surprise!

I commented, " Jonathon it's important to go through the checkout and pay for our stuff because..." "With the dollars we pay for our stuff." "Yes, we use money to buy the things we want. If we walked out without paying for the stuff... (no response) what would happen?" Jonathon's response... "we will have our money dollars for Disneyland."

NOT the answer of, we could get in trouble, the police might be called, etc..., that I was looking for! Technically he is right! We would indeed still have our "money dollars," but it'd probably go toward court fees, attorney, etc...  Don't think I'll try to brooch the subject of court/attorney fees for not paying for our merchandise!

Oh Jonathon! You make me smile!

Search and Rescue

Here it is 11:30 p.m.. I should be in bed since I have to work tomorrow, but nope... I'm awake. Why??? Because the dreaded words have escaped Jonathon's lips once again, "I can't find my..." Tonight it's one of his MANY notebooks. I don't see sleep in my near future. I'd like to say this is an isolated incident, but sadly, it is not. We have been here before and I'm sure we will find ourselves here again.

I was thinking back on all of the "searches" we've done over the years and the one that tops the list would have to be the great search for Woody's cowboy hat.

Now before judging the lengths we go to when trying to locate a missing item keep in mind... the obsessing is UNIMAGINABLE! It consumes his thoughts, which in turn means after awhile of listening to the obsessing, I start to think a vacation in a padded room with a nice tightly wrapped white jacket would be nice, or at least... quiet!

Jonathon had many different  Woody figurines from the movie Toy Story that he had collected. He loved Woody's cowboy hats and still does. On this particular day, Jonathon had been out in the backyard playing, in falling snow, with Woody, when tragedy struck... Woody's hat was missing!

I looked around in the snow with Jonathon and Lindsey for awhile and then decided backup was needed. I called my sister who came over with her kids to help in the great search for Woody's hat. Tim came home from work to find us in the backyard with flashlights, examining the snow.

We searched until our hands and feet were numb and decided to give up the search till morning. After coming in the house and Jonathon being quite upset that Woody's hat had not been located, Tim grabbed a shovel and a flashlight and started shoveling through the snow! I believe it was around 10:00 that night when Tim came in victoriously holding Woody's hat! It took six hours to locate the hat! Tim actually shoveled our backyard, looking for a stupid plastic cowboy hat that was all of 3" in size!

I guess it's proof that sanity has no price!

Pretending

Coming home from our shopping trip in Casper (a 25 minute drive) I was trying to keep Jonathon off his movie talk. What a chore! Lately, he has been quite passionate about ‘Cloudy With A Chance Of Meatballs.’

We live in the part of Wyoming that does not have a lot of scenery to talk about. I can only comment on antelope and sagebrush for so long before Jonathon becomes irritated! Today I thought I would play  a game. I wanted to see what his idea of “pretending” would be. We’ve talked about “real” and “pretend” before, but today… he was not buying my game!

I said “hmmmm, if I could pretend I was an animal I would be an eagle! If you could pretend you were an animal you would be…” I paused for him to answer. His answer was “I’m a human boy. I’m not an animal.” I assured him I was aware that he was a human, but “if we pretend we are animals what kind of animal would you be? Like a dog or a cat? I would be a cat!” His response “I’m not a dog or a cat. I’m a human boy and you’re a human woman Vickie!” His agitation was increasing so I decided to drop the game. When we got home he said “I would be a cat with a costume” which is his way of saying “the only way you can be a cat is to dress up as a cat, because you are a human!” I know he’s thinking my Mom is crazy! She thinks she can be a cat but she can’t because she’s a human! 

He makes me smile!     

Back In The Groove

The holidays are over. Our daughter has returned to KY to finish up her Master's degree and we are getting back into our routine here at home... well kind of... we're learning a new routine, which is challenging, exhausting, but yesterday was so rewarding! Jonathon and I had the best day of communication between each other that we have EVER had. Absolutely beautiful!

We saw the autism specialists in Denver last Thursday and Friday. WOW! If I could encourage parents to do anything for their child it would be to find the money to take your child to TRUE autism specialists for an evaluation! Not to get a diagnosis (you likely already have that), but to see where your child is at and what can possibly be done for your child. I consider TRUE autism experts to be the people who are in the trenches seeing autism everyday. They see children/people with autism from the most affected to the slightly affected. They have been working directly with people on the spectrum for a number of years. They don't string you along. They give you tools to take home and use and their reports give you ideas and guidance on how to best help your loved one with autism.

We were first connected with Helen Nychka (a speech path & behavior specialist) out of Denver when Jonathon was in his sophomore (I believe) year of high school. Our school district brought her in to help with his programming and behavior. At that time, Jonathon was very isolated in an apartment rented by the high school for special needs students to learn lifeskills. He had two paraprofessionals with him during his school day because of his aggression. Thinking back to where we were and where we are... we have come a long way. We still have to get a hold on his aggression and I believe with this team of experts we will.

EVERY time I have met with Helen I have gone away with a little more knowledge and tools to try. Helen is one of the specialists we are continuing with in Denver. We are also now working with Katie Cooper, who is a psychologist, and Diane Osaki who is an Occupational Therapist & behavior specialist. They are an amazing team! From the moment we walked in the door Katie and Helen went to work on HOW we should be interacting with Jonathon. Amazing to see!!

Obviously I am very open about our experiences with Jonathon. If anyone has questions or comments please feel free to ask.

Have a great day and I am off to have a TRUE MEANINGFUL CONVERSATION with JONATHON!!! :)
My heart is VERY happy!!!