A Gesture of Love

The best purchase Tim and I ever made was a heated mattress pad! Living in the north it makes those bitterly cold nights a bit more bearable at bedtime. That is IF you remember to turn the pad on before bedtime.

A couple of weeks ago, Jonathon headed downstairs to take his shower, so I asked him to turn on my bed. I partially asked him because I was being lazy and didn’t want to go downstairs and partially to see if he could follow my directions. I was pleasantly surprised when I went to bed that night and my bed was nice and toasty warm! For me to make a verbal request and expect him to carry it out, after walking downstairs, when his main mission was a shower, is huge!

Last night I went to go to bed and saw red lights glowing from the mattress pad dial. I thought it was odd that Tim would turn the bed on since he left for work at 4:00 in the afternoon. I stood there beside the bed, running my hands over the sheets, feeling the warmth and wondering if Jonathon could have possibly turned it on when he came down for his shower.

Jonathon has a hard time expressing what he has or hasn’t done, so I gave Tim a quick call. Tim confirmed my hope. Jonathon went down to shower, and thought about ME! He turned the bed on for ME! The thought process that it took for him to think beyond himself and meeting the needs of someone else is an incredible step! It may not have been a verbal I love you, but I say it’s pretty damn close.

Yes, I slept well.

Fairytale

Jonathon shared a popular fairytale today. Well, his version… “And the dummy ass Papa Bear said, Who’s been sleeping in my bed?!” He makes me smile!

Memories

For the longest time Jonathon never expressed to us that he had a memory for events that have happened in his life. We know he has the ability to memorize movies, but that is not the same as being able to remember a real life event and share that memory with someone.  

People often assume Jonathon has a greater understanding of language than he does due to his verbal nature. In fact, the majority of his language is echolalia (repeating lines from movies). When Jonathon has original language he struggles to get his word out to share his thoughts or memories.

The other day, he commented “that Grampa DeVries is dead.” I responded, “You’re missing Grampa DeVries. What do you remember about Grampa DeVries?” I could see him struggle to bring the words to the front of his mind and to get them out in the order he intended: “with my hands… to look like this (demonstrating the movements of his hands)…on that… Grampa DeVries… on his tummy yummy.”

How wonderful for Jonathon to have that memory and to be able to share it! He and his Grampa used to play a little game where Jonathon would poke or pound on Grampa’s rotund tummy and Grampa would, in turn, let out an exaggerated moan. Jonathon loved that game because it was predictable… I poke Grampa, he’s going to bellow.

My heart is happy knowing Jonathon, is, and will carry his Grampa’s memory with him throughout his life.  

A Murderer And A Tramp?

Since Daddy-Tim works for Union Pacific Railroad he is on call 24/7. He gets a phone call and he has 2 hrs to report to work. It’s a challenge to plan to far ahead with his work schedule. The other day, the stars must have aligned just right, as he and Jonathon had the opportunity to go to lunch at our local café. Jonathon loves to be out in public, but that doesn’t mean it’s easy to be there with him.

Tim came home from their luncheon a bit exasperated! Evidently Jonathon spent all of lunch announcing to everyone in the café. “Where’s Mom-Vickie? You’ve killed her Daddy-Tim! You’ve killed her!”

Is it horrible of me to say it made me smile? Since Tim is either at work or sleeping, waiting to go to work, I’m the one who is frequently out in public with Jonathon, so I got a chuckle out of his commentary. Especially since Jonathon’s catch phrase when he’s out with me is to ask random men “Are you my father?”

Now if I look at the meaning behind those phrases my interpretation is “I wish Mom-Vickie had come to lunch with us” and “I’m thinking of Daddy-Tim.” I much prefer those interpretations to “my Daddy-Tim is a murderer and Mom-Vickie is a tramp!”  

Yeah for progress!

It's an exciting time in the DeVries home. We leave for our first family vacation, with all four of us, in 11 sleeps - that's Jonathon lingo to help him understand time. The physical act of going to sleep gives a better understanding of the passage of time.
This trip signifies not only Jonathon's progress, but how far we, as a family, have come. Until now our only family vacations were going home to visit when we were in the military and the occassional weekend camping trip. We are finally at a point where, I think, we can all handle it. It being the effects the autism has on Jonathon when he is in a new environment, but also how we react to him. When a family member has autism, they're not the only one in a confused state and working hard to understand. It's a family journey.   
It's hard not to get excited about our trip. Jonathon is floating around the house. He is so full of excitement and anticipation. These are the times when I feel blessed. Blessed that I get to see his childlike spirit that is lost by the majority of adults.
This will definitely be a trip to capture on film!

SURPRISE!

Anyone who knows me, knows I can be a little ornery.  OK, quite a bit ornery! In my defense there are reasons to demonstrate that character trait to Jonathon, legitimate reasons. It is important that he learn the element of surprise and what that looks like, so what better victim, errrr, I mean subject than his Dad.

I would not describe Tim as a fix it person. It partially comes from years of living in military housing where everything is maintained by making a phone call. However, occasionally he will attempt the minor fix, and on this particular day we needed to move our thermostat downstairs. Not a big job, but an opportunity to teach and to learn.

I stood there and watched Tim for a bit and decided this was a teachable moment. A good parent always looks for a teachable moment! I recruited Jonathon to help me in my endeavor. We gathered our supplies (Pop Its), made a plan and headed back downstairs.

We stood and watched Tim, waiting for the exact moment, and then it happened, just as he touched the screwdriver to the wires on the thermostat… POP POP POP!!! It all happened so fast, but I remember Tim going up, Tim coming down and the entire time he maintained that googley eyed expression so he could demonstrate SURPRISE to Jonathon! Now that is a dedicated Father!

Grief sucks!

Ugh! I’ve unexpectedly found myself back in a place of grief. That place where the emotions are still so raw and painful, even after all these years.  And, I’m the one who invited it in. I didn’t give it a second thought when I dug out old home movies. My intentions were to find video clips of Jonathon over the years and create a power point, for a presentation, on how we’ve progressed over the years. I didn’t realize we even had video footage of Jonathon before the diagnosis and I certainly didn’t realize the sadness it would bring.

I found myself searching the videos. Where, when, is the moment that the autism crept in and took over? There has to be a moment. How could I have missed it?  A part of me wants to find that moment and tell the autism to F@*# OFF! That it can't have my child. The other part of me feels that if I did that I'd be denying who Jonathon is today. That he is somehow defective; unacceptable as he is... and I won't do that.  

I’ve always felt like I had three children, Lindsey and the two Jonathon’s.  Somewhere in those early years of Jonathon’s life, the first Jonathon, the Jonathon I brought home from the hospital… evaporated. I didn’t get to say goodbye. There was no funeral for closure. He was just gone.

I hate this place of grief. It causes me to question things that were and are beyond my control. Things I thought I’d made peace with, but here they are again. How do I make peace within myself between those two babies? I don’t want to give up one for the other. I want them both. I love them both.  

Mr. Bald or Mr. Peg Leg

Developmentally Jonathon is around 5, 6 years old... you know, the age when kids are curious and ask questions no matter where you happen to be. Jonathon's current curiosity is directed at a man who receives services at the same physical/occupational therapy clinic as Jonathon. This man first caught Jonathon’s attention due to his bald head. Jonathon is obsessed with bald men! He’s decided he wants to be bald. Not totally bald, he wants the donut of hair that loops around the lower back of the head!  

The first time Jonathon encountered this follicle challenged man he enthusiastically commented, “Look he has no hair! That man is bald. Is his name Mr. Bald? Do I have hair? Am I bald?” Try as we might to redirect his maine attraction, Jonathon was having nothing to do with it. He was like a pit bull with jaws locked and not about to let go anytime soon. The 10 minutes left in his therapy session seemed to last    f o r e v e r. As we’re leaving, I looked over and noticed the man has one leg. Once outside I let out a huge sigh of relief.  Awkward situation avoided!   

A week goes by and we’re back at therapy, and so is Mr. Bald! There’s no dodging the bullet this week since we’re all in the waiting area together.  Jonathon, of course, notices immediately that this man is missing a leg… and the questions/comments begin. “That man has no leg! Hey mister, your leg is missing!” Mr. Bald very patiently explains to Jonathon that the doctor had to cut it off. Then the moment I wished I could make myself disappear… “Is his name Mr. Peg Leg? Is that Captain Peg Leg?”  

Once in the car, we had a discussion about the man’s leg, as well as his name.  What did Jonathon take away from our conversation… “The doctor will fix Captain Peg Leg’s leg and then he will put it back.” Ok, where am I supposed to go with this conversation? “No, the man’s leg was cut off and thrown away or burned!” Yeah, I’m sure that conversation wouldn’t cause permanent trauma!

Gotta go, I’m headed to the library to find a book about people who’ve lost limbs!

The day of LOVE!

I've never been a person who expects gifts, flowers, etc... on any holiday. I prefer, that on a random day out of the year, someone who was thinking of me, decided to tell or show me.
The best random sentiment of love I received from Jonathon occurred years ago. He was seven at the time with barely any of his own language. His communication was what we call his "movie talk" or echolalia - repeating movie lines he's previously heard.
I was in the kitchen washing dishes so I could keep an eye on him out the window while he played in the backyard. I don't remember the back door opening, I must have been lost in my thoughts. Suddenly, Jonathon had come up behind me, wrapped his little arms around my waist and clearly said "I love you." Before I could turn around and sweep him up in my arms and tell him that I loved him too, he was gone.
I often wondered, what happened in those moments that enabled him to seek me out and tell me, in his own words, that he loved me. Yet, it doesn't matter what happened, but that it did happen.

HELLO THERE!

"HELLO THERE" is the perfect title for my first post, as it is Jonathon's signature greeting to EVERYONE who crosses his path. For years, Jonathon's echolalia (repeating phrases previously heard and memorized, mainly from movies, to communicate) would seriously increase when we were out in public. Finally, I realized, the increase was due to his desire to communicate/interact with people. After an outing, I said to Jonathon "I think when we're out in the stores you'd like to talk to the people, but you don't know what to say, so you use movie talk." He very intently leaned in toward me, giving eye contact, and responded with a long drawn out, "y e s..." His underlying look... "FINALLY LADY! Could you please help me already!"
I decided the best way to help would be to role play what he could say to people while out. During our role play, he decided on is own unique greeting of "HELLO THERE." To this day EVERYONE Jonathon encounters, no matter their economic, racial, social status or ability level, they get a "HELLO THERE" from Jonathon. One of his most endearing qualities... people are people, no matter what.